SO WHAT HAPPENED?

oops, i did the disappearing act again. darn! i was on such a roll with posting again and then whoosh, 3 weeks go by and nada. 

so what happened?

a few short days after the premiere airing of ticked off, we flew out to SF to see DR H. i planned on posting my thoughts about the documentary once we got down to SF. but, clearly, that did not happen.

so what did happen?

life.
lyme. 
and the roller coaster that life with lyme is.

so what happened?

in short; a sudden onslaught of nausea, increased vomiting and tremoring

in many ways, what happened is not explainable. 

it is often very hard to find the words to explain what happens in the world of lyme. my blog is meant to give a glimpse into what goes on behind closed doors but many times, it is just hard to find the words to describe what that looks like or how suddenly things can change. 

so we (graham and i) did something we've not ever done before - we filmed the sudden attack. we thought it might give folks a new perspective on what lyme looks like. lyme patients often hear "you don't look sick". what does sick look like anyway? lyme has a way of redefining that. after all, sick doesn't always look limp, pale and lethargic. 

at first, we just recorded a few seconds of footage but then, inspiration hit and we decided to make it into a "video blog" and share it on FB. we were completely caught off guard by the response we got... it made a huge impact and people wanted to share it as they found it to be a very useful awareness tool. so, i thought it would be a good idea to post it here on my blog as well. 

a short back story of what happened before:

this attack came on very suddenly during our second office visit of the week with DR H. prior to this, i had been feeling "ok". in fact, the day before, we had spent the day on the beach at santa cruz. i had started a new anti-microbial treatment protocol 6 days earlier so a herx reaction was somewhat expected - however, no one was expecting what happened to happen. just before the tremors started, i began throwing up. i have been dealing with daily vomiting episodes for 19 months now, so barfing is not out of the ordinary for me however, there had been a steady increase in the vomiting in the week leading up to this and it was accompanied by nausea. the nausea is a new thing. the vomiting began at DR H's office. before i knew it, he was IN the bathroom with me. shortly thereafter, the tremors and twitches came on. i am grateful that i was with DR H when the tremors started. he was very caring and reassuring and immediately implemented medical interventions but i have to admit, i was a bit mortified to be barfing my guts out in front of him.

here's the video footage we shared on FB. it has taken me quite awhile to post it here. it was filmed on october 17 in our hotel room in california- it is but a brief glimpse into what is happening...i promise, there is no footage of barfing!

so what happened since the video was shot?

we are home from california and mainly, we are just taking it one day at time as my medical team tries to sort all this out. i saw a specialist at a local hospital just shortly after arriving back in canada. he was very lovely and he wanted to try and set up some treatment for me which he felt could be beneficial. we were shocked and so grateful to be offered help. we left that appointment feeling as if we'd just won the lottery! however, last week, i got the very disappointing news that this had fallen through. i do believe this doctor was very sincere in his desire to help but his hands are tied by red tape and bureaucracy. it is so difficult to have your hopes raised only to have them come tumbling down again. it is what it is, and i must just pick up my hope, tenderly brush it off and carry on. 

DR H has set up supportive IV therapies for me thru a local ND and has started me on meds to address adrenal issues. i have had 3 very mild and mini tremor attacks since getting home. i'm on very powerful anti-nausea medication which has helped with the nausea a bit but has not stopped the episodes of vomiting. i have lost 6 lbs since the video was shot. i am tired and weak and as a result, have been laying low but i am hanging in.  i would appreciate your prayers. please pray for wisdom for my docs as they sort out what happened and what is happening. please pray for me as i continue to battle on.  

BEHIND THE SCENES of Ticked Off

for the past two weeks, i've been frenetically emailing the press release for (c'mon everyone, say it with me now) Ticked Off: The Mystery of Lyme Disease. i've also done some good old fashioned door knocking and pounding the pavement personally delivering the press release to both neighbors and various businesses in our city. 

and i am not alone in my quest to reach the masses. 

i have received multiple requests each day for the PDF version. Thank you to each of you who have requested one and are helping to spread awareness. there have been daily updates from other lyme patients who are extending the news far and wide. many of them make my efforts look pitiful by comparison. 

so hat's off to all of you who are quietly going about spreading awareness behind the scenes! i know many of you are doing so at great physical and emotional cost - sharing your story time and time again is hard and draining and more often than not i suspect many of you are exerting and giving every last bit of your precious energy in order to do so. 

keeping busy with the distribution of the press release has been a good distraction - but underneath it all, behind the scenes, i am anxious. worried. scared. my brain is running a million miles a minute on a closed circuit loop...i suspect if you look close enough you may actually see the light from a spark or two erupt from my ears. my gut is tautly wound. it's hard to swallow around the tightness in my throat.

we shared our painful story with a group of individuals we didn't know and then had to trust them to put that out into the national (and international) media...and now we are counting down the hours until we all see how it will play out...
(and i've been running around like a wild banshee trying to get more people to watch. ask me how that makes sense!)

of course, it is natural to worry about how our own personal story will be told and perceived but this is about so. much. more. than us.
there is just so much riding on this. so. very. much. 

and now the hours are winding down.

and there is not much more that can be done. what's done is done - what's not done...well, there is nothing that can be done about that now. it's kind of like the feeling you have when the final store closes on christmas eve and you still have one more thing on your list. it's a sort of odd sense of regret and relief. like, how it's a bummer you didn't get that last little gift but you are glad the agony of fighting the crowds in the mall is over. 

which reminds me, the crew filmed us in the dying days of november and into the dawning of december. traditionally, i (generally) have the halls fully decked and christmas tree up by the third week in november. since they were spending 2 days filming and interviewing us in our home, i had to delay decorating. 

on the final day of filming, avery suddenly turned to the crew and said, 

"ok are you guys done yet? could you get moving so we can get on with things here. we couldn't decorate our house for christmas because of you. you know what, you guys are like the crew that stole christmas!"

Avery & the crew who stole Christmas

so, i'm kicking myself now that the crew that stole christmas never officially interviewed that girl. i don't know why. it just didn't happen. it was crazy and busy and stressful and somehow she never did a sit down with them. none of us realized that until after they had left.

i really do regret she never got a chance to speak her mind.
my girl has been known to say some pretty profoundly insightful things.
however,
she also has her father's humor.
maybe it's for the the best...
you never know with that girl.

i went thru an enormous roller coaster of emotions during the taping - and it stayed with me for several weeks afterwards.

i am very good at thinking i didn't do something good enough.

i thought of the 101 things i could have said. 
i thought of 101 i should have said. 
i thought of the 101 things that were more important to say than the 101 things i chose to ramble on about.

i thought about why i said some of the things i said and how i can be way too chatty - especially in awkward silence sort of situations
("this is our war book" is a perfect example of that- and lordy, that is in the trailer)
and the worst?
i felt like i had had my best conversations with the director off camera.

but that is just me being me.

i had a friend call yesterday. she's done something just like this before and so she knows what really goes on behind the scenes.
she gets how i'm feeling and i was glad to know that.
and we laughed about it.
we laughed about how she cried in her interview and how horrified she was
and
we laughed that i think that it is terrible that i didn't shed one tear during mine.

tonite as i watch the clock wind down, i'm holding on tightly to words of encouragement another friend sent me....

"i hope you know that either way - even if you aren't entirely happy with how everything is presented, not only was it a courageous thing to do but the right thing to do. it gives the opportunity for many to learn and protect themselves or get the help they need because they didn't know what was wrong...and those that are skeptical? well, that's their own journey."

as i was sitting here waiting to for the final pic to upload, a thought just came to mind - about how God is always working behind the scenes, bringing about His purpose in His time - and it's hard to get that, grasp that, believe that especially with the stuff of life that just doesn't make any sense at all but i know that it is true. 

sometimes, we can clearly see His hand in a situation but more often than not, we see Him in retrospect. we look back and say, "okay, God, i see what you were doing there." but just because we didn't see it at the time it was happening doesn't change the fact that He was there, the whole time, working behind the scenes. i'm good with that. i can rest in that.

EXPOSED - The filming of Ticked Off

so the airing of Ticked Off: They Mystery of Lyme Disease is a mere 2 days away now. 

the day before yesterday, i stumbled upon an archived journal entry about our first day of filming...it was a fully written entry - the pictures that went with the story were even uploaded but i never published it. 

why?
because by the end of that first day of filming, i was raw. 

the film crew were wonderful. they were respectful. they didn't overly pry. and we even shared a good many laughs. but every time you tell your story, a part of you re-lives the pain, the suffering, the abandonment, the rejection, the horror
and
that is hard.
really, really hard. 

i felt exposed. i felt vulnerable. and back then, i guess i just didn't have the gumption to make that all public.

and ok, honest to goodness, i will be completely transparent here - posting the story meant revealing i had (have) superficial worries about my hair and certain camera angles...and i have to admit, i was embarrassed to admit that.

i'm putting it out there now.
why not?
some of it is funny. at least i think so. some of it made me laugh when i read it.


november 29,2012 was the first day of what ended up being three days of filming.

just before we left for our appointments with DR H, the film crew came to our hotel.

the reason they came to the hotel was two-fold.
one to have a bit of a meet and greet.
the other to film us getting ready to drive to DR H's office. 
it was awkward. quiet. weird. unnerving.
suppose those feelings are to be expected when total strangers walk into your space, camera in tow and begin to capture your every move.

The Crew from Merit Motion Pictures

what does one do when a film crew is with you?
why, of course, the most important thing to do is to act natural...which naturally feels like about the most unnatural thing to do.

do you look at the camera? or not? do we talk? do we not? and if so, what on earth do we talk about? 
the weather? 
vomiting? 
colonics? 
ha ha.
for the most part, we all sat around in awkward silence.
the kids quietly played minecraft on the laptop.
the camera man zoomed in on them.
initially, they sat there stoically solemn.
then suddenly, they evolved into animated, amped up, hyperactive goofballs.
parker moved around the most he has in about 3 months. so much for representing the worst of what this disease can do. nothing like a little nervous energy to get one moving. 

natural? not remotely.
finally, the time to leave was upon us.
however, i needed to take my next dose of meds first.
i walked into our hotel kitchen.
camera guy follows.
sound guy too.
great.
they are behind me, i thought.
that means one thing.
a butt shot. any woman's worst nightmare.

i was still pre-occupied with that thought as i nervously poured a glass of water and retrieved my pills
suddenly a boom mike is dangling above my head.
great.
self consciously i gulped down a handful of pills.
move on to mixing the homeopathic tinctures i'm on.
drip. 
drip. 
drip. 
those were the longest 15 drops i've dispensed in my life.

finally, it was time to leave for DR Hs.

avery went to put on her shoes. 
the camera guy followed her, still filming.

she looked up at the camera.
cue eye roll.
cue melodramatic forehead slap.
cue exasperated sigh followed by,

"you're going to film me tying my shoes? are you serious? really? how is that newsworthy?" 

they then filmed us leaving the hotel. 
wanted to even capture us walking out of the door of our hotel room and getting into our vehicle.
just act natural. umm. yeah. okay.
it was the most awkward exit of our lives.
we marched out stiff as soldiers on parade.
hup, two, three, four, down the side walk towards the parking lot we woodenly marched.
kids in front. graham and i tailing behind.
camera filming us from behind.
("oh no, please, not another behind shot!" i silently screamed in my head)

at the corner of the hotel, the sidewalk separates into two walkways. we went down one, they whipped down the other, by-passing us so that they could now film our approach to the car. 

do you smile?
look somber?
i'm sure graham and the kids looked like deer caught in headlights
i, on the other hand, was just so grateful to not have a camera focused on my hind quarters, that i'm pretty sure i looked woozy with relief.

graham opened the car door for me.
like i've said, we were behaving in the most unusual manner.
off we zoomed to DR H's office
a 25 minute drive.
black suv in hot pursuit the entire time.
filming from behind
then
zooming up beside us camera hanging out the window

avery ducked every time they came along side of us.
the rest of us, sat stiffly in the car.
should we talk? 
do we just face forward? 
well, clearly, that would be advisable. 
after all, forward facing whilst operating a vehicle is a smart move.

speaking of forward facing...  
my hair was sprayed so stiff that even when i turned my head to the side, my hair remained forward facing.
no flowing locks here. 
no doubt about it, i had major helmet head going on.


beyond my coif being a fire hazard, i will admit the whole hair thing hit a bit of a frenzied crescendo in the week leading up to this. i should probably back track a bit here.
you may recall i am a newly minted blonde...having made the jump from living as a brunette for nearly a decade.

for the filming i was neither.

i was no longer brunette.
but
i was not a blonde
i was somewhere in that awkward in between stage.

i had begun the transformation in august 2012 - not knowing that we would be filmed for this only a mere 3 months down the road. 

going from black to blonde proved to be a long, somewhat terrifying process to undergo. it meant enduring the 'awkward day-glo orange' phase. 
naturally, i was in that day-glo phase when the cameras started rolling.

no. it was more like multiple shades of day-glo orange.
it was a virtual psychedelic rainbow of sunset hues.
sunsets are a thing of beauty...but they belong on the horizon not as a face framing halo.

in an effort to keep reflections on this experience authentic, i won't lie - despite the fact that i am a bit ashamed about it... in the week leading up to the filming, i will admit i had some minor major moments of freaking out over my hair.
i spent an inordinate amount of time pre-occupied with it. 
and visited 2 hairdressers. 
yup. 
two. 
much to my relief, the second hairdresser was able to tone it down.

embarrassed to expose that truth...yet, i'm betting some folks are still gaping at the above photo and will understand i had cause for angst... and several rounds of bleach. even my husband suggested i should "do something" with my hair.

DR H looking all spiffy

we finally arrived at DR Hs office.
much to my relief, he was there and fully prepared to appear on camera.
he'd clearly put effort into his appearance. those that know DR H will understand how completely uncharacteristic this is.

his clothes were ironed.
his hair was brushed.
i'd hazard a guess that it had even been recently trimmed.

clearly i'm not the only one who had thought about physical presentation... and he's a man. 
justifying myself here.

in the spirit of keeping it real, i might as well address the issue of clothing. or may i say, the minor wardrobe malfunction i am terrified may have been caught on camera. i must say that i tried on a few outfits before i picked out what i would wear. but in all honesty, i did not give my wardrobe choice a whole lot of thought...after all, the battle with my psychedelic hair color took up most of my energy.

so the clothing choice.
that i may come regret. 
in fact, i already have.

i wore jeans, a cardigan and scarf
pretty basic and neutral attire.

the entire crew piled into DR H's tiny exam room and filmed our appointments. 
DR H. me. parker. graham. and the 4 men tv crew. camera. boom mike.

the room got really warm really fast.

when it came time for my exam, i shed my cardigan and scarf. 
neurological work-ups are a bit of a work out in that they require movement. arms out. arms up. bend this way. bend that way. jump up. squat down. 

i was bending into a squat when it suddenly hit me
my jeans are a wee bit a whole lot lower than my natural waist line
panic washed over me in a nano second.

heaven help me, i think my underpants are showing!

somehow, every unflattering picture i've ever seen printed in grocery store tabloid magazine flashed through my shellacked head. i could barely focus on dr h's directions after that...

i was just thinking the worst was behind me, when DR H proceeded to give my belly a thorough palpitation and extensive exam.
my BARE belly.
OH LORDY.
i nearly died as the reality of the situation washed over me...there is a massive camera inches away from my gut.

i am an exposed specimen.
(the following day, i made them promise not to use that footage.)

after our appointments, they did a 30 some minute interview with DR H.

i have such gratitude for our doc...his wisdom, his dedication, his (stupid) sense of humor and his willingness to put himself out there. in his profession that is incredibly risky. i have no idea what they asked him. we had to sit in the iv clinic area of the office and were not privy to what was said. darn.

by the end of the day. i was hooped. we had spent just over 5 hours filming. TV stuff aside, it's a long day to begin with. our appointments with DR H are intense and require my full attention. it takes an inordinate amount of energy to remain focused and try to process all the stuff we cover.
add to that, a camera and 4 people shadowing you and it was entirely overwhelming.

once we got back to the hotel the stress of the day hit me. 
and hit me hard. 

panic and anxiety rolled over me and knocked the breath out of me.
my body was buzzing and my head was fuzzy.
my heart skipped beats in my chest
a surreal mirage of the day's events shifted into my mind's eye
they replayed in my head;
a never ending circuit looping thru my bleary mind

what have we gotten ourselves into?
i kept asking myself over and over
i don't want to do this.
it's too much. way too much.

why did we ever agree to do this?
i can't handle this.
i feel so completely exposed. 
i wanted to run and hide. 
i felt myself near the brink of total hysteria.

why did i ever agree to do this?
i threw the covers over my head.
a desperately futile attempt to shut it all out.
the continuous noise in my head just roared on.
i was absolutely reeling.

i felt the weight of the world on my shoulders.

i. feel. exposed. exponentially.

back to the present
so that was how i felt way back in november 2012
and 
i find i am nearing that state of mind again
and
how i felt then is how i feel today
the thoughts are back
haunting me late into slumberless nights

why did we do this?
because this isn't about us.
it's about so. much. more.
it's about saving lives and fighting for change.

i feel the weight of the world on my shoulders. our story is but a drop in the ocean that is wide and deep and overflowing with the suffering of lyme.

this i know.

we must keep telling our story
every. single. one. of us. 
we must raise our collective voices and tell our stories a thousand and one times over or however long it takes until change occurs.

until canadians can walk into any doctor's office, obtain a clinical diagnosis of lyme and be given adequate antibiotic treatment.

until canadians with chronic lyme are treated with compassion, dignity and respect and prescribed long term antibiotic treatment in their own country.

until there is a cure for chronic lyme.

we must tell our stories
until the truth about lyme prevails
and
the corruption is exposed

OFFICIAL TRAILER OF Ticked Off: The Mystery of Lyme Disease

this morning the official trailer of the documentary Ticked Off: The Mystery of Lyme Disease was released on the Nature of Things website. if you don't blink at all, you may just catch a glimpse of myself, graham, sparky and our doc, DR H....no Harrison tho'. (he's currently sulking in the corner)

i also want to say thank you to those of you who have already responded to this post and/or my email. we've heard it is even beginning to circulate through several school districts in our area. that is so important - as children are at greatest risk of contracting lyme. it is exciting for us to hear how far and wide you are spreading the news! thank you, it means so very, very much to us!

in some of the feedback i've received, two primary questions have been popping up in regards to viewing the documentary. i forwarded on those questions to the producer/publicist and they were quick to respond with some helpful answers! below are the questions which are followed by the answers the producer gave me!

Q1. Is there a way for folks in the USA to watch? 

A1. We don’t have a broadcaster in the USA yet, but hopefully will at some point. In the meantime though they can pre-order dvds by emailing info@meritmotionpictures.com

Q2. Some folks don't have PVRS and are not free to watch on Oct 10 - These folks are wondering if the documentary will be airing on any other already schedule dates/times? 

A2. The show will be able to be viewed on-line within Canada on the Nature Of Things website after show airs

keep spreading the news, friends!

TICKED OFF: The Mystery of Lyme Disease

it's official - the goertzen family is coming to CBC TV this fall...in one short week to be exact!

TICKED OFF: THE MYSTERY OF LYME DISEASE

Premieres Thursday, October 10, 2013 at 8PM (8:30PM NT)

on CBC-TVs The Nature of Things

Feel free to email me for PDF version of the press release
sngoertzen@gmail.com

last week, it was confirmed by the producer and executive producer of Merit Motion pictures that our family's story will be part of the upcoming documentary about Lyme in Canada. as you may or may not remember, we were filmed for this way back in november 2012. the film crew spent 3 days filming in our home and also filmed us in SF during one of our trips to see DR H. it has also been confirmed that their interview with DR H is in the documentary.

we suspect that our infamous dog, Harrison Phineaus Goertzen, may even be in the documentary. the entire film crew was enamored with him. in fact, the camera man spent a copious amount of time filming (and cuddling) our pooch. he did not cuddle any of us. none of them cuddled us. after all, they are professionals. given that Harrison is the strong, silent type, we're certainly curious to see how much actual air time he'll get.

friends, i am specifically asking for your help to spread the word of this documentary - and i am doing this knowing full well that i had a serious hair disaster 7 days before the filming took place and as a result had the spray-your-hair-into-submission kind of very fried, seriously brassy helmut head for the filming. trust me, there is no ego involved here. this is about saving lives. our family's primary objective in participating in the filming was to help spread awareness and educate the public in the hope that we can prevent other families from experiencing the horror of Chronic Lyme Disease. you can help us meet that objective by spreading the word to your friends and family. 

How is this relevant to your friends and family?

Because Lyme is the fastest spreading infectious disease in North America & the world and anyone, anywhere can contract it.

Please consider this - a few weeks ago, the US Center for Disease Control reported that 300,000 Americans PER YEAR contract Lyme. Canadian Scientists have predicted that 80% of Eastern and Western Canada will be living in areas at risk by 2020.

Sparky and DR H
no, nothing awkward about having your doctor examine you on camera

Still not convinced to ask others to tune in?

Please reconsider! Public awareness and education of this insidious disease is paramount. We believe the information in this documentary will save lives.

Here's a link to view a clip from the documentary. This clip features an interview with Dr Maureen McShane. Dr McShane is a Canadian physician that practices in New York so that she is able to treat Lyme patients. She 'gets' Lyme because she suffers from the disease herself.

 

http://www.cbc.ca/player/Shows/Shows/The+Nature+of+Things/Extras/ID/2408817950/

i'd really appreciate it if you could help us spread the word. you can email me at sngoertzen@gmail.com to get your own PDF version of the press release... 

Sparky being interviewed 

there are several simple ways that you can help: 

first, post about it on facebook. share a link to this blog post on facebook.

second, email the press release to friends and family

third, print off copies of the release and post it around your neighborhood - eg, library, pet stores, vet office, community centers, health food stores, etc.

fourth, email copies of the press release to your MLA and MP. they need to be made aware that Lyme is a growing national health crisis and a real threat to ALL Canadians. it needs to be on their radar. 

please be sure to tune in or set your PVR to CBC on Thursday, Oct 10 at 8PM!

THE GOLF STORY

Roy Kanda is a teacher from sparky's former elementary school. Roy, also, runs 5C Learning - an after-school tutoring program and through this program has been assisting me in educating sparky. 

he's aware of sparky's journey with lyme disease. during one of his tutoring sessions, sparky told him about this new IVIG treatment his doctor had prescribed. when i picked sparky up that day, Roy asked me a bit more about this new treatment. he mentioned sparky had said it was very expensive and that he wanted to help raise funds for it. 

a few days later he called us and excitedly told us about a charity golf tournament he has hosted for the past 3 years. the proceeds of it go to Kid Sport BC. he had spoken with the other event organizers and they had all agreed to donate 1/2 of all proceeds raised at this years tournament to sparky's medical treatment! 

we are so thankful for this kind and practical gesture!

the tournament is on august 23, 2013 at Guilford Golf and Country Club in Surrey, BC. the deadline for registration has been extended to July 30.

The tournament will be a "Texas Scramble" format. Festivities include a long drive competition, a kp competition, a silent auction, putting contest, a fantastic dinner, prizes and just good times.  

if you'd like to be involved with this tournament, please email me for the registration form... sngoertzen@gmail.com or event organizers at fivecgolf@gmail.com 

the tournament will also include a silent auction. if you would like to donate to the 5C Golf with a cash or silent auction donation, please email fivecgolf@gmail.com 

last week, we had a lyme friend and gifted artist, Linda Steele, donate the painting pictured below to the auction. read about Linda here or visit her blog Art for Nature and Life. we are so grateful and humbled that she would part with one her beloved pieces to help us.

as i blogged about in several earlier posts and at post titled, An Unfolding Miracle, sparky's medical team has prescribed IVIG, a specialized treatment. his doctor's have determined that he will need a minimum of three months of this treatment. he has undergone his first month of treatment and is set to undergo his next cycle of treatment this coming Wed, July 31, Thursday, Aug 1 & Friday, Aug 2. we had a phone appointment with DR H last week and he has increased the dosage of medication sparky will be receiving for this next round. this has also increased the cost. BC Medical does not cover any of this treatment...the medication for this treatment costs $4,000 PER month.

Dr H says it will take at least 2 full courses of treatment, before we should expect to see results. however, we have seen some promising improvements since his first round of treatment which took place July 3-5 (read about it at Elusive Elixir). we are very hopeful this treatment is working. 

if you can not be involved with this tournament but would like to help financially with Parker's treatment, we would be so grateful. You may send him a donation through our PayPal account - grahamgoertzen@gmail.com

thanks

THE ELUSIVE ELIXIR

sparky has finally started his first cycle of IVIG treatment!

FINALLY.

it's been a long journey to get here! in so many ways, IVIG has been an elusive elixir...first, just to secure this treatment was a year long battle - as i blogged about in the post called an unfolding miracle . then when we finally got it and had it in hand, his veins began collapsing making it impossible to administer! 

we began to feel as if this was the elusive elixir that would never come to pass.

now, here we are. finally. miracle of miracles.

DR H feels he's stable enough to begin the IVIG... this first cycle was originally scheduled to begin roughly 5 weeks ago...

but, suddenly and unexpectedly, 2 weeks before his first cycle of IVIG was scheduled to begin, his veins started to collapse. we were unable to administer his full doses of IV abx. as a result, he began to de-stabilize and decline. there is a greater chance of a successful outcome with IVIG treatment in lyme patients,  particularly children, when it is used as a combined therapy with IV abx. DR H had some concerns about moving forward as scheduled but after some discussion, we decided to move forward with a trial dose. we would use just a half dose and do one infusion and gauge his response to it. 

unfortunately, by the end of the 4 hour infusion, his pain and symptoms began to intensify. by that evening, his pain was so bad, he spent most of the evening balled up on the couch screaming and moaning. for the next 3 days, his joint pain was so severe he had to crawl on his hands and knees to get around the house. 

it was having the exact opposite effect of what we were hoping for.

we were incredibly discouraged.
however, DR H was certain that the flare of pain had more to do with the lack of consistent IV abx dosing than an adverse reaction to the IVIG. he reassured us by telling us that in his experience, and in that of many of his colleagues, lyme kids tend to 'tank' without combination therapy.

it was clear that something needed to be done about the vein issues that were impeding sparky's ability to get his IV abx. THUS the decision was made to move forward with the vascular procedures in the USA. this has given us a way to consistently access his veins and as a result, he's been back on full time IV ABX for 2 weeks now. he has gone thru several intense herxes (die-offs of the bacteria) - as a result he has had many days and nights where his pain levels have been unbearable but he has had some better moments here and there. this is a very a good sign. which now brings us up to this present week.


finally starting IVIG, the elusive elixir!

DR H has changed things up a bit from the original treatment plan because sparky flared with that trial dose of IVIG. he wants to proceed cautiously and slowly. therefore, the infusions will now take place over a 3 day period rather than 2 days. the length of the infusions will remain the same (4-6 hours each day). so this will make for long days.

his first infusion was wednesday. we spent a grand total of 6 hours in the doc's clinic...but everything went smoothly.
we arrived at the clinic at 9:15AM and got things rolling immediately.  

first, the doc sugar bear crispified him... 

in medical terms, this means he was pre-medicated with IV benadryl as there is a risk of allergic reactions with this type of medication

then, the infusions began. 
s.l.o.w.l.y.
1 drip every 10 seconds for the first 2 hours
then
the rate was moved to 1 drip every 5 seconds during the third hour.

his heart rate elevated with the increased rate. this is a common side effect but it meant that the infusion rate had to be slowed down to 1 drip every 7 seconds.

it was a long day.
i was very, very grateful when a friend dropped by with a coffee. 

let me pause here...and jump up on my awareness platform and preach from the pulpit for a moment.

the friend that brought me coffee was there because her husband recently contracted lyme. a locally acquired case - either in 100 mile house, BC or langley, BC area. maybe even from his backyard. no one will ever know for sure because they never saw the tick (this is not unusual as they are so tiny that most people never see them).

my friend's EM/bull's eye rash

what is unusual is that he got the EM/bull's eye rash and knew what that meant. in short order, he was able to get on abx. today, they were in the clinic we are at because the doctor here is lyme literate. they are in good hands with this lyme doc and have been prescribed adequate and aggressive treatment. i am thankful that my friend's husband is doing well. 

please, be aware, my friends, lyme is everywhere.

okay, stepping down now.

back to my sugar bear boy.

he slept a good portion of the first day which was good for him. boring for me. but i'm managing to get caught up on a bit of blogging which i enjoy and there is a steady stream of lyme patients coming thru the doors to see the doc here. i'm getting the chance to finally meet in person some of my sweet online lyme friends.

today, we were back at the clinic by 9:15AM again to start the entire process over. tomorrow (Friday) will be a repeat.

so, it has begun. the elusive elixir is finally flowing into my boy's blood stream. it is carried on a tidal wave of fervent prayers and hopes.

what is the hope?

the hope is that this will turn things around for him. that it will relieve his suffering. that it will put him in remission.

DR H has said we will not see benefit for 4-6 weeks and it could take two full cycles of IVIG before we see any improvements. the next cycle will begin in 4 weeks and is scheduled for July 31, Aug 1 & 2. visitors are welcome - (the clinic we are in is close to our home) please feel free to email me sngoertzen@gmail.com for the address for the clinic. i expect that it will be the same dosing schedule as this time around but will know for sure after i speak with DR H. (we have an appointment with him on july 16th). the 3rd cycle will be repeated 4 weeks after that. 

for now, the challenge is to push through this grueling schedule and keep believing. keep hoping. keep trusting...all the while not really knowing if this will work. it is an expensive gamble - each cycle of medication costs $3,000 - but we will keep moving forward in faith. we are so thankful for God's provision for this first cycle and are trusting He will provide for next months.

SUGAR BEAR CRISPIFY ME

one day we were in the cereal isle of the grocery store and avery suddenly pointed at a box of sugar crisps and said, 

"sometimes sparky looks like the sugar crisp bear"

she was right. sparky does closely resemble the sugar crisp bear when he's on narcotic pain meds
or
when he's herxing and neurotoxic

we all had a chuckle over it and from that day forward, whenever sparky is loopy or medicated, we call him the sugar crisp bear.

we knew he would need sedation for one of the procedures he recently had. he, also, had to be pre-medicated with benadryl. so, he knew he would head into his sugar crisp bear state of being.

once he was prepped for surgery and a peripheral line had been placed, they were ready to give him the sedation. 

he looked at the nurse and said,

"go ahead, sugar bear crispify me!"

obviously, THAT had to be explained. the sugar crisp story gave way for a moment of lightness in what was a bit of a tense situation for everyone. 

for reasons unknown, they had difficulty sedating him and it took a considerable amount of mediation before he was crispified.

because the sedation wasn't kicking in, the surgeon said that it would be ok for graham or i to sit in on the procedure - so long as we could handle it. after all, they had their hands full with sparky - the last thing they needed was another patient.

i could barely contain my excitement! are you kidding! handle it? i was all over that - hek, i would have scrubbed in and assisted if they'd offered! 



the nurses told him that a side effect of the sedation was that it makes your nose itch. if that happened, all he had to do was let the nurse know and she would scratch it for him.

sure enough, it wasn't long before he had to take her up on her offer.

after several more doses than expected, he eventually succumbed to the sedation...and in his crispified state he did encounter a ginormous bowl full of noodles, grew 7 fingers and a had a giant spoon chasing him.






it's hard to believe that 2 weeks have already come and gone. his recovery and healing from the procedure has gone way better than expected. PTL! we had hired a private nurse to come in to help with care...a great big, burly guy nurse. he was super - however, after one visit, and observing my care techniques, he felt that i was more than capable of taking over and doing it myself. 
ugh. 
am i capable? yes. 
do i want to shoulder the responsibility myself? NO. NO. NO!

somebody, please, sugar bear crispify me!