HOW YOU CAN HELP

This week a major news story about Lyme Disease broke here in BC. it made the front page of the vancouver sun newspaper.

BC DOCTORS LACK ABILITY TO DIAGNOSE LYME DISEASE

in a nutshell, a confidential, internal report about lyme disease in BC that was commissioned by the BC government came to see the light of day this week. this report proved what lyme patients across the country have been saying for years - that the current testing is flawed and inadequate and is used mainly to deny patients access to treatment.

the report also revealed:

"the majority of GP's lack knowledge about LD"
"testing is poor...better testing is needed to prevent progression to chronic disease"
"no treatment for chronic LD patients"
"the current state of diagnostic methods for chronic LD and other related tick borne infections is inadequate"

the report goes on the make 8 recommendations for change to be made in our province. you can read the report in full by clicking on the following is link: the 8 recommendations cited in the report start on page 44

SCHMIDT REPORT ON LYME IN BC:

following day, mike farnworth, a leading NDP candidate endorsed all of the report's excellent recommendations and called for action from the BC government to follow through with them. here is the link to that:

OPEN LETTER TO THE HEALTH MINISTER

less than 24 hours later the government released a statement saying they have pledged 2 million dollars to fund research for chronic diseases - CFS, fibromyalgia and lyme disease

BC GOVERNMENT PLEDGES 2 MILLION

this is all great and exciting news. the truth is FINALLY coming to light. it is the start of a new day for lyme sufferers in BC (and hopefully across canada). we are possibly on the cusp of a huge breakthrough in the lyme community - but we need your help to keep this moving in the right direction!

HERE'S HOW YOU CAN HELP:

here is an opportunity to get involved - if there ever was a time when we needed for people to make their voices heard on our behalf and on the behalf of those so devastatingly impacted by this disease, it is NOW.

for those that can, please write letters, send emails, make phone calls - there are two critical areas of concern that need to be addressed:

1. please hold the government accountable in following through on the recommendations made in the report. click here to read the 8 recommendations (start on page 44).

2. ask, beg, demand that the lyme disease community is represented at the research table - specifically the Canadian Lyme Disease Foundation (canlyme). it is far too easy to direct research in such a fashion as to give erroneous data. we have seen this happen in the USA with the IDSA panelists who refused to review or take into account the medical research and peer reviewed literature that proves the existence of Chronic Lyme infection.

to date, canlyme has not been invited to participate in this ground breaking research initiative - despite their repeated requests to do so. WHY? Please do not allow our government to take a biased, one sided approach to their research. the lives of many canadians depend on that.

at the end of this blog post, you can find links where YOU can make YOUR VOICE heard. Please! this is so important to our family. change is so desperately needed. we do not want more families to go through what we have and continue to go through. it is imperative that the government implement the recommendations put forth in the SCHMIDT report. the lives of so many Canadians depend on it.

if you don't know where to start or what to say, the following is a letter that friends of our family wrote to the minister of health. they have given me their permission to publish it here. you are free to "use" this as a "form letter" or use it as a jumping off point to write your own letter.

Dear Minister Dejong,

We are writing to express our huge disappointment in how the diagnosis and treatment of Lyme Disease is handled in our province. We personally know a number of people suffering from Lyme who have had to travel to the States for appropriate diagnosis and treatment, at great physical, emotional and financial cost.

Our province's position on Lyme has resulted in maintaining inadequate testing for Lyme. Doctors in BC are woefully uninformed about Lyme, and put their medical licences at risk if they treat Lyme patients.

We have always been proud of our medical system, but observing how our country and province deal with Lyme patients has changed that pride to profound shame and frustration.

The recent government report highlights the fact that we need better diagnostic testing, and that doctors need more training so that Lyme can be treated easily when caught in the early stages. Waiting for years for correct diagnosis and treatment is creating an unnecessary drain on our medical system, and is devastating the lives of Lyme sufferers.

There is a great opportunity here for the government to acknowledge the injustice provided to people with Lyme and their families, and to immediately begin to implement measures to change the current deplorable situation. Many lives depend on your response.

Thank you for your consideration,

Susan and Ian Chubb

write a letter. send an email. make a phone call. please.

no child should hear;
"i know you have a life threatening illness but i'm sorry, i can't risk my license to treat you."
but that is what a pediatric doc at BCCH said to our son parker

no child should hear;
"yes, i know your lab came back positive for a tick borne infection but i'm not going to treat you! go see your guy in the USA . get him to treat you."
but that was what our family doctor of 19 years said to our son taylor upon admission that he had a positive test result for an active tick borne infection.

help us advocate, lobby and push for positive change for the diagnosis and treatment of Lyme in BC and all of Canada - so that no more families and children will suffer at the hands of an ignorant and inadequate system which is based on antiquated medical literature and biased "scientific opinion".

on behalf of our family, we would like to send out a HUGE THANK YOU to lyme warriors, LLMD's and those who have and continue to advocate for change on behalf of the lyme community. and thank you to those of you who continue to support, encourage, pray and unwaveringly stand with us on this journey. we are humbled.

"never doubt that a small group of thoughtful, committed citizens can change the world. indeed, it is the only thing that ever has." -margaret mead

vancouver sun reporter who broke story:
pfayerman@vancouversun.com

editor at the vancouver sun:
sunletters@vancouversun.com

editor at the globe and mail:
newsroom@globeandmail.com

health minister, mike dejong
email: mike.dejong.mla@leg.bc.ca
phone: 250-953-3547

drop your local MLA a line:
MLA FINDER

BELIEVE IT OR NOT

believe it or not, the flu has struck our home...again.
unbelievable. i know.
high fevers. headaches. ear aches. super sore throat and wretched cough.
our home has become a revolving door for this stupid flu that won't go away.
avery was home from school with it last week
and
taylor hasn't spiked a fever but nonetheless he's been feeling pretty wretched and has spent a lot of the past week in bed
and
parker woke up with it saturday morning.
he was sick. sick. sick. i was still biding most of my time flat on my back. and graham was working. needless to say, saturday was a really longgggggg day.

today we left for seattle. we have appointments with DR D tomorrow. the past 2 weeks have been pretty grim for me and when parker came down with the flu on saturday, i was wondering just how in the world we were going to manage the 2.5 hour drive down to seattle. but it never ceases to amaze me how rapidly things can change with our conditions.

by yesterday, both parker and i were significantly improved. i am so thankful for that. our drive down was fairly uneventful. and believe it or not, i even had the energy to pop into a ross dress for less on the way down. that was nice. about the last time i was out and about (other than going to doctor's appointments) was when we were in SF 5 weeks ago. believe it or not, about the only thing i did while we were there (other than going to doctor's appointments) was popping in to a ross dress for less. i think i see a pattern developing.

have a herx.
get the flu.
shop at ross.
have a herx.
get the flu.
shop at ross.

is ross the cure or the curse?
graham would say it's a curse.
i would beg to disagree.

i am currently writing this from our hotel room in seattle where, believe it or not, i just christened the porcelain bowl with a round of barfing. great. just great. i'm not sure if it's the flu or not. after all, i've been barfing for the past 4 months. i suspect it could be the flu tho' as my regular barfing is usually accompanied by pretty vile retching - this time around i kept that down to a dull roar. did i mention we're staying at the red LION hotel? ha ha.

avery has recovered from her bout with the flu and graham has not succumbed to it...yet. however, i'm barfing and parker is hacking up a lung and considering we're all cooped up in a tiny hotel room, i'm sure it's just a matter of time before one or both of them come down with it. altho' avery is taking precautions... and has sequestered herself in the closet. yes. she doesn't want to share a bed with parker so, believe it or not, she's sleeping in the closet.

avery's closet accommodations

taylor stayed home this time. poor guy had to drag himself to work today. we're sad he's there and we're here but i'm sure he's glad to have a little peace and quiet. taylor's girlfriend, mara, volunteered to babysit harrison while we are away. and her parent's very generously opened up their home to our furry baby. i think it was a very big deal for her parent's to "allow" a dog to stay at their home. i'd hazard a guess, that their regretting that decision about now.

harrison and mara

apparently, he peed on their carpet the first hour he was there. i can't believe it! yup, he took a whizz on those poor people's beautiful, pristine white carpet. believe it or not, he's not had an accident in months. way to make a first impression, harrison. i wouldn't be surprised at all, if mara's mom and dad kick you to the curb.

well, i'm off to barf and then off to bed.
and
tomorrow, we'll see DR D
and
maybe, just maybe, barfing and all, i'll pop into another ross afterward

SOMEWHERE IN THE MIDDLE

i am somewhere in the middle.
my brain somewhere in no man's land.

that is the great nugget of wisdom coming from DR H when i spoke to him via phone earlier this week. it's only been 4 weeks since we saw him in office in SF. but pretty much all hell has broken loose since our return. and most of that in my brain. naturally, hindsight is 20/20, and now i can see how the downward spiral began already while we were still in SF.

i kept blaming the internal head pressure and increasing sensitivity to noise on that sinus/ear infection i came down with in the days before our trip. it wasn't completely illogical to think that. and the migraine i got our 3rd day in SF, well, i just chalked that up to just being run down, nutritionally deficient and the stress of travel etc. etc. etc. but...

even tho' we were away, i couldn't relax. even though, i was tired, i couldn't sit still. even though i was exhausted, i couldn't sleep (even with sleeping pills). even tho' we were away, i was just super agitated and felt "over caffeinated". every day. all day long. i spent a lot of time pacing around our hotel room.

all of that should have made me sit up and take notice.
it didn't.
and when the sound of the drapes being opened in the hotel room beside us jarred me awake and made me jump. well, THAT should have been the red flag that more than just a bad cold was the issue.

but i didn't clue in
i didn't WANT to clue in
i am just so super sick of being sick and tired that i figured maybe if i just ignored it, it would all go away
and if i just soldiered on, i could push through it
after all, it was "only" a cold
so i kept going and ignoring and trying to 'behave' myself well

and over the past 4 weeks everything just got increasingly worse
and
the noise and head stuff became increasingly difficult to ignore
in order to "function" i had to wear earplugs
but
i didn't really 'think' about it
it's just what i had to do to get by
and
i just kept rationalizing it all away as the cold that just wouldn't let up

it's weird how the abnormal can become normal
i was startling easily
and
i was exhausted
and
i was running a steady low grade fever
and
i felt like my head would implode
and
i even with ear plugs in i was cringing at every little sound
and
i felt jacked up and over caffeinated
and
i had tremors and twitches
and
i'm super over emotional
but
hey, i'm just over tired and it's just a bad cold, right?

so i just pushed through it
after all,
i HAD to soldier thru
because
there were teacher conferences to go to
and
doctor appointments to go to
and
prescriptions to fill
and
then
it
happened

my body revolted
and
my brain melted down

2 weeks ago, all hell broke loose

i started vomiting uncontrollably
not flu barfing but "my kind" of barfing;
that seizure kind of barfing
violent retching
and
exhaustive heaving
it got so bad and i got so weak that all i could do was lie there and barf on the floor
i could not be touched
i could not be moved

graham was in the bathroom with me, making phone calls to DR H's cell and trying to make arrangements for someone to come and take care of avery and i kept barfing and crying and then that crazy, jacked-up, over-caffeinated feeling i've been living with for the past 4 weeks unleashed as a full on blown out panic and anxiety attack

i TOTALLY FREAKED OUT

my brain went into sensory overload
i started having flashbacks of all the other times i have been this sick
and
i also became consumed by the thought that if avery left the house, she would die. i was convinced of that.
it was horrific

hello, PTSD and herxing all rolled into one

so. uh. yeah.
i was a pretty big, hysterical, sobbing, barfing mess
and
i was in so much physical pain that i couldn't handle even the thought of being moved and so i lay on the bathroom floor for 3 hours before i managed to crawl the 6 feet to my bed

that is pretty much the condition i remained in for the following 5 days
in bed, locked away from the world, ear plugs in, sound a deafening and excruciating beast to endure, the simplest, most inconsequential type of noises;
like ice cubes in a glass,
pages turning in a book,
a bird chirping outside my window,
the rain,
whispering voices,
tiptoeing silence.
all of it sending shock waves of electric-like torrents of pins and needles rippling over my body, their reverberations echoing thru my head, triggering a kind of infantile startle reflex and pain, pain, pain
and panic and anxiety attacks coming in near non-stop swells, spiked fevers, swollen, tender lymph nodes, diarrhea, barfing, tremors,twitching, visual disturbances, and atypical partial seizures.

evidently, things have gotten a bit better over the past couple of days
ha ha
that just made me laugh
it's so extraordinary to write about losing my mind in one sentence and then so casually lead forth with such a casual, non-nonchalant, "evidently, things are better now."
i probably am truly mad
and
i'm still snickering
and
mad or not, i'm able to finally ramble on about all of this
and
string thoughts into cohesive sentences (at least, i think am)
altho' i've noticed i keep misspelling "diarrhea"
and
for all the talk about it, you'd think i wouldn't have to keep having to spell check it
go figure

so, for now, for today, for right this moment (and yes, finally i'm not blogging in past tense but this very present moment!) the intensity of my symptoms have finally let up. i still have diarrhea, fevers, tremors, twitches, arrhythmia, and for the most part, am residing in bed with ear plugs on, but if i don't move too much or sit up for too long, i actually feel okay. ha ha. it's been pretty awful and it isn't great but it is better than it was.

last week, when i was at my worst, i feared i had gone totally bonkers
i saw those news clips of charlie sheen's televised rants and all i thought is
"wow. charlie sheen is my brain personified."
and i'm not poking fun at him or whatever is going on with him. i just have felt that freaking crazy.

i have been more or less bed bound for the past 13 days now. the first 5 of which i couldn't have gotten out of bed even if my pants were on fire but after that - well, i have managed (with graham's help) to white knuckle it to a couple trauma therapy appointments.

am i really in any condition to go?
uh, no.

i'm not really "well enough" to go
but
i'm also not "well enough" to NOT go
you catch my drift?

and the thing is, it HELPS
hallelujah
at least it helps with the PTSD part of me
i am incredibly grateful for this God-given therapist and OEI therapy (more about that another day)
so long as it helps, i'll go
desperation has it's place
i'll do whatever it takes

we've spoken with DR H several times
and
earlier this week, both graham and i had a long chat with him
trying to make a plan of attack

DR H is pretty insistent that we somehow find or hire extra help
and
as far as my blown up brain goes?

the problem with that is two-fold:
one part active infection;one part toxic overload
both in the hypothalamus area of my brain. the hypothalamus is the brain's command central and regulates pretty much everything. obviously, having that area of the brain infected and toxic creates havoc through out the CNS and ANS and that is triggering atypical seizures and is why i am one big jangled up mess of crazy neuro symptoms
blah
blah
blah
he explained it all
i retained only bits and pieces of his explanation

simply put, there is a war going on in the hypothalamus region of my brain
and
the active infection part HAS to be addressed but at the same time, hitting it too hard creates a toxic environment in my head
and
finding the delicate balance between the two is the fine line we are walking right now
as DR H put it,
we are treading in the no man's land of a war zone right now

for the time being,
he has started me on the IV abx rocephin and 200mg oral mino
and
we have increased the dosage of one of the anti-seizure meds i am on

i have to text an update of my condition to DR H every day
and
on monday, we will be heading down to seattle to see our doctor there
and
then we'll go from there

i don't know where that will be or what that will be
but
for now, i'll soldier on somewhere in the middle