May 13, 2011


have lyme?
will travel

on monday, we'll be leaving for SF to see DR H again.
fly away

i'm tired of the traveling.

it's gotten old
even the thrill of target and ross have lost their lure
i just want to stay home
i just want it to all go away.

i know what the drill is
we've done it so often and for so long now that i could probably do it with my eyes closed -
i'm tired of "commuting" to see my doctor

i'm tired of packing up copious amounts of IV meds - enough to fill an entire suitcase. i'm tired of navigating thru airports with a wheelchair. i'm tired of dealing with border patrols and airport security. i'm tired of what traveling will cost me -financially. emotionally. physically. i'm tired of creative hotel room cooking - plastic cutlery, microwaveable meals and coffee pot porridge.

i'm tired of traveling
i'm exhausted at the thought
i'm tired of my passport and nexus card being medically necessary.

i want to fly away for a holiday not for a doctor's appointment
i want to go to california for the sun not for my sons
i want to leave my heart in SF not my wallet
i want to go on a holiday to simply escape life's strife - not in order to save my life.

i'm not alone
oh, so not alone

have lyme?
will travel.

welcome to the reality of being a medical pariah.
welcome to the reality of having a "rare" disease.
rare? my ass.
reality? a pain in the ass.

our situation is only rare in that we are ABLE to commute south of the border and haven't had to move down there. the reality is that we have met many canadians on our travels down to the USA. none were down there on vacation. all were there for LD treatment. some, like us, are able to commute. some have had to move there. on past trips, we've traveled together, we've randomly bumped into some in the airport, we've met them in our doctor's office and we've even visited with several in their temporary homes.

this business of canadians with lyme having to head south for treatment has been described as a "mass exodus". i would hazard to say that that is not some gross over exaggeration. no. not at all. off the top of my head, i can name off 20 or so folks just from our immediate community and that i know personally. all of whom have been forced to seek treatment in the USA.

on several occasions, we've even had USA border guards ask us about this "mass exodus" when we mention the reason for our trip is lyme related.
we've had them ask,

"don't they treat that in canada?"
"wow, there's a whole bunch of you going across."
"you are the 3rd person TODAY that i've had come thru for that reason."

this mass exodus by canadians to california specifically has resulted in what has recently been dubbed the "lyme leper colony" by david cubberley. david, who serves on the board of directors for the canlyme foundation, wrote a piece about this on his blog; the lyme disease debacle.

david has been an outspoken advocate for canadians with lyme for several years now. he is astoundingly articulate and a straight shooter who sheds light on the whole lyme debacle with respectful clarity. we are so fortunate to have him advocating on behalf of all canadians suffering from lyme disease. he was recently interviewed on CBC radio - specifically discussing the lyme leper topic. you can listen by clicking on this link. the interview with david starts at the 13:05 mark and is about 8 minutes long. please take the time to listen.

i've gotten david's permission to re-print some of his last post, "visiting canada's lyme leper colony in SF" here on my blog. but i would encourage you to go to his site and read the post in it's entirety. part of the post is about one family's battle in particular. please be in prayer for this family. please be informed. please be in prayer for us as we travel. please be in prayer for this lyme leper community. those are not faceless people - they are my friends. peter. lisa. marie. alison. deb. heidi. alex. carolyn. nicole. chris. kim. kent. lisa. julia. oliver. marilyn. christine. riley. parker. taylor. and those are just the few that i know personally. and they could just as easily be one of you. lyme is not rare. it is real. it is here and everyone is at risk. be aware. get educated. avoid lyme. something has got to give in canada. i'm tired of travel.

the following is the excerpt from david cubberley's blog post entitled

"San Francisco attracts Canada’s Lyme-lepers because it’s home to some of the most Lyme-literate physicians in America. Since there’s no local knowledge available in Canada (that is, clinical experience with Lyme sufficient to discern its patterns) and since access to antibiotics for chronic infection is taboo, you’re forced to choose: either go where there’s clinical skill and access to antibiotics, or just watch your loved one deteriorate painfully, and possibly even die.

I’ve noted the tragic irony of this before: Canadian families who revere our healthcare system are forced to uproot, go to a foreign country and buy ‘medically necessary’ care. All this because Canada has adopted American ‘practice guidelines’ that ‘manage care’ by shedding responsibility for as many sick insurees as possible. The guidelines do this by means of manipulated disease definitions.

If this sounds diabolical – well, there are elements of that about it. The algorithm (or formula) that determines whether a Canadian test detects Lyme or not is loaded against showing it (mis-primed, thresholds set too high, etc). So is the algorithm rigidly restricting antibiotic therapy to a short course for the few cases ‘proven’ by the faulty two-stage test (about 150 in all of tick-ridden Canada)

Algorithmic medical care is machine-medicine at its worst. It trumps the clinician’s and the patient’s roles in detecting and diagnosing disease, and together deciding the best course of therapy. It denies the patient the knowledge that there exist two distinct sets of medical guidelines for Lyme and co-infections – one relying on the faulty test that nearly never finds it, another based on clinical diagnosis from symptoms and ongoing treatment. It arbitrarily replaces complexity with unwarranted certainties.

This needless, inhumane denial of diagnosis and treatment in Canada victimizes families at every level. Those with resources to liquidate are ‘free’ to bankrupt themselves buying care state-side; those without are ‘free’ to suffer in silence and lose their quality of life and independence.

Consider this reality: every day Lyme diagnoses are missed all across Canada, generating new victims who’ll ultimately be forced to seek treatment in a foreign country and pay out- of-pocket. Some of them will become so sick they’ll have to go and live there. Many simply won’t be able to afford that choice.

So long as the status quo prevails, there’ll be a steady flow of new recruits to the Lyme-leper colony – but this is a journey no publicly insured Canadian should ever have to make! Your taxes pay for medical care without regard for your ability to pay, whenever you need it and for as long as you need it. We’re all denied access to that care if we happen to contract tick-borne infection. We shouldn’t wait to get Lyme before coming to grips with that grim reality. We should Act Now to bring public health back to its mission of preventing and treating disease.

There are many good reasons to visit San Francisco.

Lyme disease should never be one of them."

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