OH CANADA - CALL TO ACTION!

{Oh Canada! True North strong and free}

Did you know children, age 5-14, are at greatest risk of contracting Lyme disease - a serious infection contracted from a tick bite?

Did you know that Lyme is the fastest spreading infectious disease in the world & research suggests that 80% of Canada will be at risk of exposure by 2020?

Did you know there is no reliable testing currently available to diagnose it & most doctors in Canada are not adequately trained to clinically diagnose or treat it?

Did you know that Lyme can become a debilitating chronic illness if it is not diagnosed promptly and treated adequately?

Our family, along with thousands of others, lives with the devastating & life altering consequences of misdiagnosis and delayed treatment. It is a travesty that we do not want to see other families endure & so we have fought long and hard for awareness, better diagnostics & treatment in Canada for many years.

As a result, in 2014, BILL C-442 was passed into law requiring the Canadian Government to come up with a Lyme Action Plan & federal framework to address this growing public health crisis.

A draft of that framework (click here to read) was released on February 7, 2017 for public comment. The Framework fails to take real action, has no funding, does not address the issue of testing and fails to protect Canadians from Lyme.

Anyone, anywhere can contract Lyme...The health of our nation; our families & Canada's future, our children, are at risk.

We need you to sign this petition before March 1, 2017 to demand this draft Framework be rejected in its current form. The govt must be held accountable in delivering a plan that will protect us and our children & ensure a future that is healthy, strong & free from the stigma of Lyme.

https://www.change.org/p/minister-philpott-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now

Sign the petition & join the more than 30,000 Canadians who have already signed. Please feel free to share this post!

{Ensuring a bright future for all our children is the responsibility of the community, schools, families & like it or not, politicians as well.}

****

Click here to read: Lyme disease sufferers devastated by federal government's action plan

A message from the Canadian Lyme Disease Association (Canlyme.com):

As per the requirements of Bill 442, An Act respecting a Federal Framework on Lyme Disease Health Canada held a conference on Lyme disease in May of 2016.  It was a well balanced conference that revealed significant divergent opinions among experts on the most important issues to the affected Canadian… diagnosis and treatment.

Without engaging the stakeholders for input, the Public Health Agency of Canada has written a draft version of the report that is to be presented by the Minister of Health to parliament by May 15th of this year.  Rather than follow the good faith intent of the legislation that would have seen good robust discussion on the wording of the report, the federal bureaucrats fell back into their closed door non-transparent in-house mode of operation.

The report in no way meets the mandate of the legislation.  It ignored everything that was presented by experts and patients at the legislated May 2016 conference. It is NOT a framework and there is nothing to build upon.  It has to be set aside and rewritten with the patients and their experts.

Please read the wording of the framework carefully, specifically Sec 3.

” … for the purpose of developing a comprehensive federal framework that includes

(a) the establishment of a national medical surveillance program to use data collected by the Agency to properly track incidence rates and the associated economic costs of Lyme disease;

(b) the establishment of guidelines regarding the prevention, identification, treatment and management of Lyme disease, and the sharing of best practices throughout Canada; and

(c) the creation and distribution of standardized educational materials related to Lyme disease, for use by any public health care provider within Canada, designed to increase national awareness about the disease and enhance its prevention, identification, treatment and management. 

The draft report that PHAC has written HAS MET NONE OF THE REQUIREMENTS LAID OUT IN SEC. 3 and it certainly was not consultative. .

WONDERLAND

i'm just another Alice who's trying to find her way out of her head

 and into a wonderland. 

                                  ~V. Nada

wonderland trail - fall 2015

as i mentioned in healing takes courage, i've been dealing with a flare up of panic attacks, uncontrollable vomiting and endless, pink tears recently. i'm not entirely sure what is all contributing to it but it had the markings of what a strep flare (pandas) looks like with me (sore throat, sudden onset panic attacks, intensifying anxiety and rapid weight loss) i'm pretty sure there are other factors at play as well but for the time being, i'm back on amoxicillin and awaiting a phone appt with DR H (lyme doc) later this week. as per usual, the amoxi brought me back to baseline anxiety & stopped the panic attacks within 12 hours of first dose.

that's the magic of moxi! lol 

when my anxiety is heightened, i feel caged and edgy. i have an inner trembling that i cannot shake and i can't sit still. since august (2015) biking has been my escape from that. so last week when i had a sudden and abrupt intensifying in my anxiety i pushed myself to go for a ride - even though i wasn't feeling all that well physically.

about 45 minutes into the ride - i had my first outburst of uncontrollable sobbing followed by a panic attack (this would be the first of what would be many in the days to come but the first time it's ever happened on a ride)

the fact that it happened during a bike ride fully did me in. 

Wonderland - Spring 2016

riding is the one place and the only time i am totally free from anxiety - my head is clear and i feel happy and free. and yet, there i  was on my knees on the side of a trail sobbing and shaking and feeling like i was losing my mind.

i was unable to escape this sense of overwhelming grief and alarming sense of doom, my thoughts spinning wildly, chest raggedly heaving, stomach painfully constricting, and an inner trembling so intense it knocks the wind out of me and causes my legs to give out beneath me. a panic attack is like toppling head first into a rabbit hole -

Rabbit Hole - the term comes from Alice in Wonderland where she fell down the Rabbit Hole into some bizarre stuff. It is commonly used as an expression or euphemism for a portal to a bizarre world with significantly strange happenings and extremely surreal situations.

its a chaotic whirlwind of surreal images and overpowering emotions and it tosses me mercilessly to and fro - the gale force winds of anxiety quickly sweep away my ability to discern truth from lies - during an anxiety or panic attack, i truly believe that this is me, this is how i always am and how i will always be - i am wholly convinced of that as fact not fiction. i don't lose touch with reality but i can't find my way out of the rabbit hole...and now that was happening on a ride!?!

are you freaking kidding me?

that overwhelmed me with a sense of desperation, sorrow and rage.

is there no part of me that can be untouched by the scourge of strep? is there no place left untainted by the sting of lyme? is there nothing sacred nor any place protected from where the loathsome tendrils of anxiety seeps in and chokes life into a limp, lifeless, tear-stained rag doll.

it eventually passed and i got my back on my bike and rode down the mountain. but i was left rattled. unsettled. grieved. and fearful that i had lost the one thing that literally keeps me sane.

could it happen again? 

biking is my happy place. the sense of wonder and joy and freedom i experience on my bike is something i cherish. 

could that have been taken from me now?

i've lost so much to these diseases - could i have now lost this thing that has been my beauty in the ashes?

Wonderland - Spring 2016

those questions and thoughts haunted me over the next few days...i knew i'd have to set about to answering them with another ride but i was too physically and emotionally drained. 

6 days passed.  

then sunday dawned and i looked at the hubster and said, 

"today we ride for tomorrow we may die."

ok. i didn't exactly say that...i'm almost but not quite that dramatic. lol.

we tossed around some ideas on where to ride. i had it in my mind and heart, that i wanted to head up to squamish and ride a trail called 'wonderland'. we had ridden up there once before (fall 2015) and i just remember that wonderland had filled me with wonder - with it's spectacularly vivid hues of green, eclectic mix of vegetation and towering, moss laden trees it had felt magical and majestic. plus the name of it in context with my life seemed rather fitting (and yes i am dramatic enough to think of that).

off we went.

the trail was everything i remembered it to be 
and
i was everything i am when i am on my bike. 

free. happy. hooting and hollering. alive. giddy.


i was ripping along and thinking, "oh, its just so pretty i should slow down and take it all in...maybe even stop and take some photos..." - but then i thought, 'nah.' - once i'm riding it's hard to stop. i just wanna go. and i wanna go fast.

mere moments after having those thoughts, i got some air going over a drop and my tire hit the end of a root that was poking through the loam. instant flat. i have tubeless tires so that takes skill! 

but the flat did not deflate my mood.  i took the moment to stop and smell the forest. hear the birds. to be still. i snapped some photos...and i even learned how to change a flat.

wonder of all wonders, i was able to be fully in the moment without movement or sound. 

sometimes, i listen to music when i ride (just one headphone in) because it helps me with balance and rhythm. ironically, when the flat occurred, i was listening to twenty one pilots song called 'ride'...

"i've been thinking too much. help me.

oh, oh, i'm falling, so i'm taking my time on my ride"

so i took my time on my ride down wonderland. then we booted up to alice lake and had a nice climb up a trail called '50 Shades of Green' and a fun shred down a run called 'Credit Line'...which was full of rocks, berms and root drops that made my heart sing (and no more flats - so no pictures from those trails!)

it was an incredible day soaking in the breathtakingly vibrant vegetation and rad trails...

best of all, it was all ride and NO cycling thoughts!

PS
Wonderland is also a walking trail. so if you don't ride you can still enjoy it - i highly recommend checking it out!

PPS
it's tick season so be tick aware! wear repellents and do tick checks!

LYME LDI IMMUNOTHERAPY REVIEW

LDI/LDA IMMUNOTHERAPY is a fairly new treatment for lyme. i know there is a lot of buzz about it in the lyme commuity. some folks are finding it very helpful. others not so much. i have had several inquiries asking for an update on our experience with it. it's hard to believe that both sparky and i started this treatment almost exactly year ago today! 

(you can read my original post about LDI/LDA Immunotherapy by clicking this link)

it has taken a really long time for me to reach any sort of conclusion on whether or not it is helping us for several reasons:

first, for the longest time, i really felt like i had no definitive answers on whether it was helping, flaring, or doing nothing at all! 

second, it is a slow treatment process - the dosing occurs once every 7 weeks. even with using ART testing, it can take several rounds before you find the 'right' dose for your body... which means many months can go by before you even find a therapeutic dose! then it can take several more rounds at the therapeutic dose before you experience any sustainable/notable changes in symptoms. 

third, add in the usual unpredictability and complications that are par course for treating lyme and well, the results of LDI/LDA have literally been about as clear as mud for the longest time! 

fourth, there has been a lot of drama and trauma in this house in the past 7 months which has made writing difficult.

here's the basic crux of it: it's a mixed review.

it does not appear to have worked for sparky. he is no longer on it. but wait, we may re-start it down the road! 

it does appear to be working for me...although i have not used it to treat lyme (yet)... i really do believe that this therapy is helping my body heal - i think my experience with using it to treat my other issues (strep, mold, mycoplasma, chemical & food sensitivities) is relevant to the lyme/chronic illness community as many of the issues i have are co-morbid with lyme. i am working on writing an update about it.


i know most lyme patients are seeking info specifically for LDI in regards to lyme. so the remainder of this post will address my take on sparky's experience as he was specifically treated for lyme with it. 

for weeks i've been laboring over this update - ack. i'm so frustrated with it! i guess i've struggled with thinking what is the point of writing a detailed account when the simplified answer is "no, it didn't work".... on the other hand, i'm a detail oriented sort of girl and so i quite naturally digress to writing lengthy accounts. all things considered, even though it doesn't appear to have worked for sparky, i do think LDI is a worthy tool to consider in the fight against lyme. 

initially, LDI therapy was brought up in regards to using it to treat sparky after his relapse with lyme began in jan 2015 (read about his remission/relapse here)

parker has immunodeficiencies - primarily of iga, igm and igg. i also have immunodeficiencies so there could be a genetic correlation but there is speculation by his medical team that living with lyme has depleted his immunoglobulin levels. we did not know (still don't) know what caused his relapse in january 2015 but given all the immunological findings on him, we did feel like there an auto-immune component was a piece of the puzzle. 

therefore, trying LDI made good sense...yet, treating lyme is a tricky balancing act and knowing when to add additional therapies into your treatment plan often presents a conundrum. at the time the LDI was presented to us as a treatment option, sparky was 4 months into his relapse. he had only been back on abx and iv therapy to treat his relapse for 6 weeks. at that point, the abx treatment had stopped his downward spiral and he was just beginning to show signs of improvement.

we knew he was at a vulnerable place but the doctor that recommended he start on LDI has been part of his medical team since 2010. she knows his case and his body really well. we all agreed that LDI was the next right step even though we were concerned about provoking an inflammatory response while his body was already pretty reactionary. 

LDI THEORY note: 
basically, the goal of LDI treatment is to find a dose that is big enough to signal the immune system to calm down but small enough to not cause a huge inflammatory reaction. finding the right dose can take a few cycles... it is not unusual to have big flares when first starting. once the appropriate dose is found, there can still be flares in symptoms for the 7 days following each dose. as treatment continues, the patient should begin to experience a gradual lessening of symptoms and flares between each 7 week cycle of treatment. 

sparky's doctor wanted to avoid a big flare since he was still in a weakened state from his relapse, so he was prescribed a very micro dose.  additionally, his doctor felt that an underlying issue with strep could be contributing to his never ending joint pain. since LDI for strep does not historically cause huge flares, he was started on the LDI for Strep first. 

he had his first strep LDI dose in april 2015. 

he had no discernible response - good or bad - in any of his symptoms.

he was given the LDI dose for lyme the following week. 

unfortunately, even the baby dose caused a huge flare. 
(you can read details about that at The Pretty Pill Protocol)

this sucked and caused us concern but it was not entirely unexpected. altho' the duration of his flare - 6 weeks - caught everyone off guard. but there were so many variables impacting his health, that it was really difficult to know whether the LDI was the full cause of the flare or just a contributing factor. his medical team felt that it was important to keep him on it.

so we decided to stick it out and give it another try with an even smaller dose. 

7 weeks later, he was given his next dose. 
he did not have as big a flare and seemed to do a bit better for a few weeks following that one.

after his third dose, he had a flare and his body never seemed to right itself after that. his symptoms continued to be all over the map all the time and there was a slow but steady decline. 

all in all, he had 3 doses of LDI for lyme and strep. which is 21 weeks in total. 

his fourth dose was due during the first week that he was going to be in treatment in kansas. we debated whether or not to bring it and continue it or not. LDI is in pre-loaded syringes and it needs to be kept cold.  bringing it with us meant we'd have to travel with a loaded syringe on ice. with 2 days of INTERNATIONAL travel -border crossing, a 5 hour drive plus 2 flights - ahead of us we knew it could potentially complicate our travelling. trust me, crazy stuff happens when we travel! if you've been a blog reader for a while then you will know that we NEVER FLY UNDER THE RADAR (remember Sandeep and The Security Breach?) our trip to kansas was NO different. even without the syringe on board, there was airport drama this time around! 

while waiting for our connecting flight to witchita from chicago, imagine my surprise when i looked down at my boarding pass and discovered i was flying as a man! OKAY...AND NO ONE QUESTIONED THAT? there's a hit to the ego.

but wait that was no biggie compared to what happened on our return flight. that story is worthy of it's own post - it's one of those 'only that would happen to shannon' ones.

back to the reasons for leaving the LDI behind - when we made the trip to kansas we felt like we were embarking on a whole new methodology of treating sparky. we wanted to fully embrace the new. given that we had not really seen any benefit from the LDI and he was steadily declining, we opted to let it go.

i guess the rest is history as they say...

we went to kansas and that didn't work out so well. (read about that at hope is what we crave.) we're still piecing the puzzle that is sparky together - and working towards next treatment steps. we have several upcoming doctor's appointments and that fourth dose of LDI is still sitting in our fridge. i don't think he is in any condition to re-start it right now but i'm not opposed to re-assessing it for him further down the road.


if you made it all the way to the bottom of this dry drivel, thank you for reading! i don't know that it this review will be of much benefit but i hope some one finds it helpful!   

PS i am about half-way thru writing about my own experience with LDI/LDA. it's a more positive one.

THE HAT STORY

hats. specs. thrift. these are a few of my favorite things! (bikes too, but that's a whole other story and crows! and coffee!)

if you've been a blog reader for awhile now, you probably know of my love for finding bargains at retail stores - my long standing faves being ross dress-for-less and target. even though most of my blog is about our family's journey with lyme, i've  been known to write about some of my ross shopping adventures. (read about my travelling pants adventure here). despite my honed bargain shopping skills even these stores now exceed our tight budget... so for the past 2 years, i have tried to exclusively shop at thrift stores. no more ross or target for me! (mind blowing, i know!) 

there are a few retail exceptions though... Zenni Optical for my specs, Forever 21 & Ardene for funky jewelry...and then there is this hat i recently bought from the hudson bay company. however, it was sort of a thrifty purchase as i did use a gift certificate to help purchase it. i found the gift certificate in a dresser i inherited from my nana (grandma) many years ago!

my nana's dresser

 the gift certificate was from 1995... which, in my daughter's opinion, makes it so old it's practically vintage. lol. indeed, it was so old that i was actually worried about trying to purchase the hat with it. in fact, it took me nearly two weeks from the time i saw the hat in the store until i went back and purchased it. 

i currently live with a social anxiety disorder that has been triggered by a post-strep autoimmune illness. (read "this is my brave" here), so going into a store and making a purchase can produce anxiety for me. add to that, a vintage gift certificate that may or may not still be valid and i was worried i'd get arrested or questioned - like they'd somehow think i was printing fake vintage gift certificates! i know it's so irrational but these are the types of thoughts that were running through my mind.

yet, the hat was calling my name! i was imagining all the looks i could create with it and the bonus of not having to spend time and energy on styling my hair, well, the allure of that finally trumped my quirky anxiety. 

off i went to the bay. before going though, i took the time to do my hair and create a look that i hoped made me look trustworthy and un-scammer like. when i finally showed up at the cash register, i nervously presented my gift certificate and breathlessly murmured, "i have this gift certificate. i have noooooo (insert high pitched squeak) idea if its still valid."

the sales lady took it from my shaking hand. she lifted it to the light and inspected it. then she asked the clerk next to her if she'd ever seen anything like it.

i tried my best to look nonchalant and legit. 

then the other clerk said, "oh i've never seen anything like that. you need to call management and have them come take a look."

i nearly vomited.

5 heart stopping minutes passed before the manager appeared. i could feel my heart pounding in my throat as i saw her approach. the first sales clerk waved the certificate under her nose. 

"what do you make of this? have you ever seen one of these?"


the manager grabbed the certificate and turned it over and over and over in her hands. then she held it up to the light.

i suddenly felt woozy. fearing i may topple over, i grabbed at the counter to steady myself. in doing so, i dropped my purse which clattered noisily to the floor. the manager's eyeballs left the certificate and gave me and the purse at my feet an appraising once over. then she returned her gaze to my face with one eyebrow raised.  i stopped breathing. i knew with absolute certainty she was sizing me up as a counterfeiter.

then she exclaimed, "oh wow! i haven't see one of these in 20 YEARS!"

it took me a full minute to start breathing again. 

then she called over another manager. and they began excitedly exclaiming over my gift certificate and they wanted to hear where on earth i'd found it! so i started to tell them my story. before i knew it, there was a total of 4 sales clerks and two elderly customers milling around and listening to my story. then suddenly everyone was reminiscing about the good old glory days of the hudson bay company.

oh my word. it was a total hoot but by the end of it all, i was more than happy to pull that hat on low over my brows and flee the store. no more retail for me. 

there's a bit more i'd like to add to this little hat story...as my love of hats has been born out of suffering. i wasn't a hat person until i became profoundly ill with neurological Lyme Disease 10 years ago.

during my sickest years, hats became a way for me to still feel styled & put together when my body was falling apart. being someone who finds creative inspiration & joy from putting looks together this was important to me. in essence, hats helped me feel like me when the symptoms of Chronic Lyme left me with a body that felt foreign, uncomfortable & unrecognizable.

more thoughts on hats, thrifting, chronic illness (& biking) coming to my blog soon. as well as an update about the LDI/LDA Immunotherapy that sparky and i have been undergoing for almost a year now. (i've had a number of inquiries about this specific treatment and i'm sorry the update is taking so long!) 

i'm beginning to write again and it feels good. really good. yet, as good as it feels to be able to start blogging again, i have to admit, i am still having FB anxiety. psshtt! this social anxiety thing is a real beast to contend with but i am just allowing myself to be okay with that. having never been anxiety prone, it's weird to suddenly live with it but that is just the way it is right now. i am wanting to be as real about it as i can and not not feel silly or less than or beat myself up over it. that's just where things are at for me. 

FB weirdness aside, i have recently activated both mine and our dog harrison's instagram accounts again. (as if posting as a dog isn't weird or anything.) i am comfortable hanging out on there and am enjoying creating mini posts. i don't always feel that what i post there is blog 'worthy' so please feel free to find me on instagram under @ticksandtrust. and the dog can be found @worldaccordingtoharrison

thanks for reading my little hat story!

HOPE IS WHAT WE CRAVE

so i've been MIA on social media and my blog for a long while now. multiple reasons abound for my sudden and prolonged disappearance...

i don't have that many words to describe the past 6 months - well, not appropriate words anyway. 

at the beginning of august, i got strep throat which triggered a pandas relapse. this was my third relapse with this illness since my diagnosis in spring 2014 (read about that here). i am very fortunate that my symptoms respond to treatment albeit this time around it took aggressive and very high dose antibiotic treatment from mid-august until end of october to restore proper brain function. the treatment was very, very hard on my body. i was still recovering and dealing with some mild neurological deficits when we embarked on our trip to seek in-patient treatment for Parker at the clinic in Kansas. 

for those not familiar with pandas -  basically, it is an auto-immune illness caused by exposure to group a streptococcus infection that causes the antibodies in your body to attack specific regions of your brain and central nervous system. this can cause very severe neuro-psychiatric symptoms. understatement.(read more about it here or here)

in plain english, pandas is a mindf*ck. and that is putting it mildly.

but more about THAT another day. 

the same week that my pandas flared, we had uninvited, unwanted house guests arrive.

6 months later, they are still here. along with most of their relatives.

they are not welcome. they are not wanted. and we have nearly lost our minds trying everything and anything to get rid of them. 

their aggressive invasion of our home has been a complete and total sh*tstorm if you catch my drift. since december, i spend (on average) 3 to 4 hours PER DAY cleaning up after them. no lie. 

one day i may blog about it. in fact, the story-teller in me is surviving their hostile take over of our home by telling myself, "oh shan, this is going to make a great blog story." and truly it will - after all, the tales i can tell will leave you in flabbergasted disbelief at their brazen persistence.

however, the other part of me, the introverted, sensitive, idealistic momster who is stumbling raw and broken through the darkest of days...just wants to keep the storyteller silent. because so much of what has transpired in the past 6 months is just beyond words. too hard. too raw. too painful. and none of it makes sense. i am angry, bitter, grieved and beyond heartbroken. and the last thing i want to do is put the brutal, ugly, hard agony side of suffering out there - unless i have some sort of positive perspective to wrap it up with. after all, i write because i want my suffering, our family's suffering, to mean something. to be bigger than us. to help someone. to encourage. and mostly, to inspire faith and hope in the midst of trauma, suffering and pain. 

but today, i write in spite of the fact that i have NONE of that to bring to the table. NOTHING but my brokenness and the desolate desperation of our story. these are dark days, friends. so very, very dark...the kind of bewildering, scary, heartbreaking, helpless, hopeless, perplexing, WTF-is-going-on sort of dark days.

which leads me to the hardest part of this post to write about... an update on our boy sparky.

it is very difficult and painful to talk/write about Parker's situation.

our emotions are intense and somehow neither the hubster nor i have had it in us to put any of it 'out there'. yet, we want you to know that we have deep gratitude for the many, many people whose unbelievable generosity made Parker's $20,000 trip to Kansas possible. we know that each and every person who donated and/or prayed for this trip is also deeply emotionally invested in the recovery of our boy.

we get that.
we so totally and humbly get that.
in part, it's why it so difficult to share the outcome of our trip with you all as it is not what any of us earnestly hoped or prayed for. but it has sat heavy on my heart that we have been remiss in personally extending our gratitude and also letting people know what is going on. 

we embarked upon this trip with our hopes held high. after all, this was our miracle trip! how could it not work? really? especially with all that went in to getting us there! furthermore, the miraculous stories of recovery experienced at this clinic were not just internet hear-say to us - we personally KNOW people that have had IMMEDIATE and LASTING relief from their symptoms (specifically pain) while at this clinic. so we KNEW it could happen.

the pain relief aspect of healing was our primary reason for choosing this specific clinic. parker has suffered from unrelenting and intractable joint pain for 7 years now (even during his brief remission, he was never totally pain free)

we prayed and hoped and believed that he would experience a notable shift in his symptoms and a reduction in his pain during his 2 weeks at the facility. we knew it was possible however, we also knew this was not a totally realistic expectation to have. this was what we considered a 'best case miracle scenario'.

and the worst case scenario?

that there would be no notable changes during those 2 weeks in the clinic but that healing would come in the months after as he continued on the various remedies and therapies at home.

naturally, the best case scenario is what we hoped and believed for but the worst case is what we mentally prepared for. after all, it was the most realistic outcome to expect. we get that. he has been sick for a very long time  so it is not realistic to expect an overnight recovery.

NEVER EVER IN OUR WILDEST FREAKING NIGHTMARES DID WE FOR A SINGLE MOMENT EVEN CONCEIVE OF THE POSSIBILITY THAT HE WOULD GET SICKER.

but that is exactly what happened.

there were no notable changes (good or bad) in any of his symptoms until his second to last day of treatment. and then suddenly and abruptly, his symptoms flared exponentially and all hell broke loose.

let me be very clear -  this was NOT at all an expected outcome of treatment there. i know this may be a bit confusing for folks to understand since the traditional standard of lyme treatment is that you do get worse (eg herxing) before getting better. however, the whole crux of treatment at this clinic and the principles of biological medicine that is practiced there is that you DO NOT have to get worse before getting better. that being said, one also has to say that a flare of symptoms can occur even if the physician is striving to avoid flaring a patient. (a bit confusing i know. sorry. i can't figure out how to explain it really.)

parker's symptoms flared so dramatically that i didn't think we should leave with him in that condition. i asked his doctor if money were not a barrier, would he be suggesting that parker stay for another week of treatment but his doctor felt that his worsening condition was just a minor set back.  he was very hopeful and optimistic that this was just a temporary flare that parker would bounce back from within a few days.

so we left kansas with a very sick kid who was more disabled and in more pain then when he had arrived. we were in shock...yet we clung to the hope that we had just hit a speed bump on his road to recovery and soon we'd see improvement. after all, how could this not work? this was our miracle trip.

in the weeks following the trip, parker continued on all the remedies prescribed to him at the clinic. 
yet, he continued to deteriorate at an alarming rate. 

by november, he had lost 20lbs. and the primary symptoms he has been living with since his relapse in jan 2015 increasingly intensified.(severe joint pain, difficulty weight-bearing/mobility issues, insomnia, heat intolerance, facial flushing, nausea and intense noise/light sensitivities) 

it was very clear that this was no temporary setback or speed bump.

his downward spiral certainly caught everyone off guard and stumped his doctor. we spoke with his kansas doctor who postulated that parker's infections were probably too severe to respond to their remedies alone. he told us that the clinic does not generally recommend antibiotics - except in very rare cases.

he believed parker's condition fit this rare exception. 

so his kansas doctor and his california doctor (DR H) had a phone conference and put together a treatment plan. additional testing ordered by DR H revealed that parker had a very severe staph infection. aggressive antibiotic treatment for the staph was started immediately.

in our numb state, we continued to cling to the hope that once the staph was treated, he would begin to improve. after all, we now had two of the most brilliant doctors working on his case. he HAD to get better. he just had too. 

but he did not.

some symptoms (primarily the facial flushing. rashes and headaches) responded to the antibiotics for his staph infection but his other symptoms continued to worsen. in mid-december, he required testing for a condition called KPU. in order to prep for the test, he had to stop all his remedies from the clinic for several weeks. his test was negative. that was a big relief. the other relief was that his weight stabilized during the few weeks he was off his remedies. he didn't gain back any of the 20lbs he had lost (and still has not) but he stopped losing weight. this was significant because the weight loss and resulting muscle wasting was alarming. he was very frail. while he was off the remedies, he did not have any improvements in his other symptoms but at the same time neither did he get worse - he just kinda settled into this precarious state illness. we did not want to upset that balance. therefore, the decision was made to not resume any of the remedies from kansas. 

this was a very tough call to make for so many reasons.  

we do not question the integrity of this clinic and we know the medicine they practice there is powerful. during the 2 weeks we were there, we met many people that were experiencing healing. it just did not happen for parker. and that is horrifying and hard and makes no sense. we had/have no idea whether or not the weight loss or his overall deterioration was triggered by the remedies (there are so many co-morbid factors to could play a role -  too complex for me to get into). we hope that one day those medicines will play a role in his healing. it is just too upsetting to think that all of it was for nothing. but we simply do not know at this time. 

honestly, there are more questions than answers. 

that is where we are today. 

we have literally spent the last several months fighting for parker's life. trying to figure out what went wrong and what is going on. he has undergone numerous therapies and new treatments and even been seen by new doctors in the past several months. all to no avail. he is back under the full time care of DR H (california doctor). we are so grateful that DR H has not given up on parker. 

his level of disability is severe and alarming... in many ways, we are all still in shock...our family is deeply grieved and beyond heartbroken by the state that he is in. we are scared...we are sad...we are desperate....we feel helpless but we will NOT give up. we are pressing on, researching treatment options and fighting for parker. 

i don't think any one of us can even imagine the depths of parker's despair and hopelessness. we are amazed by his resilience and the fight he still has within him to keep on trying any and every new treatment thrown his way yet we fear...how much more can he take before he gives up? 

we are so grateful for parker's school therapist/counselor who has been coming to visit him in our home weekly for the past several months. thank you pete for showing up and being parker's person. there are no words to express how much you mean to us. 

i will be breaking my facebook hiatus in order to only publish this post - i have not accessed FB or messenger since august and at this time, i am choosing to remain inactive.  i am surviving and that is part of my survival. as much as i love the community of friends i have there, i just can't do FB. i can't do any of it - the advocacy part or the socializing part...or even the fun, silly part of it. 

but that being said, we do need people to reach out to us and let us know we are not alone and not forgotten. if you would like to, please drop us a line here on my blog or at sngoertzen@gmail.com.

please know that we have deep gratitude for your support and donations. thank you for standing with us and loving our boy. we are humbled.

please understand that we may not respond to emails. we are tired.

please understand that we cannot be more specific or answer more questions about parker right now. it is just too painful to rehash. what i have written here will be all that i say for now. it is everything i can possibly put out there without coming completely undone.

please understand that we DO NOT wish to be inundated with the latest miracle cure for lyme. trust me - i am a research ninja - chances are i've already heard about, researched it and probably tried it.


BUT PLEASE FEEL FREE TO:

tell us a funny story.
tell us you love us.
tell us we are not forgotten.
bring us donuts.
bring us coffee.
and
if you have a cat that is a really good mouser then please bring us your cat.

hope sleeps without me

sweet dreams surround me

but i'm left out

i need a reason to believe

these rooms are dark now

these halls are hollow

and so am i

it's hard to feel now

i won't turn to dust now

let these tears rust now

on my face

give me the spark now

to believe, to see

to live, to die, to lose, to care

to rise above, to love again
i need a drop of grace
to carry me today

hope is what we crave & and that will never change

                                                               ~ lyrics by for king & country

ps
special thanks to my friend CP who has been an exceptional sounding board and brainstormer...especially over the last 6 months. thank you for being my person. i am forever grateful for your friendship & support.

THE STINGING TAKE-AWAYS

so this is me after i got stung by a wasp yesterday...

i know. clearly a bit dramatic.
but, in my defense, it was no regular, run-of-the-mill sting nor standard reaction.
Oh NO, of course it was NOT NORMAL AT ALL because I am Queen Bee of peculiar and bizarre things happening to me.

(and just so you know, as it turns out, taking selfies is a pretty effective distraction for pain.)

i was out for a walk in our neighbourhood park and a wasp plowed into my face...actually, to be exact, it flew with pin point precision right up under my glasses and got stuck between the arm of my glasses and my temple. No lie. 

WHAT ARE THE CHANCES?

clearly, it did not appreciate the shaded UV protection offered by my specs, as it immediately backed its butt into my temple and stung me.

i reacted by screeching loudly, whipping off my glasses & frantically slapping myself upside the head. despite my ninja like moves, the stinging continued & this odd electric shock-like burning pain began rapidly spreading across my face. i had no idea if this was normal or the start of an anaphylactic reaction so i panicked. then i did the next logical thing - i made a bee-line for home...and i did not retreat quietly nor gracefully.

nope. not at all. shrieking trilly, with my arms flailing and karate-chopping the air, i half-walked/half-jogged through the park as fast as my on rubbery, shaky legs could carry me. i left stunned, mouth-gaping park goers in my wake.

i made a spectacular sight. in fact, i'm almost certain i darn near nailed the running style of Phoebe Buffay from Friends




by the time, i haphazardly stumbled into my house, my face was ON FIRE. the pain was radiating into my jaw and the entire left side of my face had this odd numb, swollen, burning sensation. i was sure my face & head must be astronomically puffing up.

i texted the Hubster to come immediately;

'SOS - I got stung by a wasp. in bad pain. come quick. FYI - don't be alarmed but pretty sure my head is swollen the size of a watermelon.'

then i took a deep breath and bravely checked my face in the mirror hanging in our entrance.

there was one, teeny tiny, very minuscule red dot at the sight of the sting.
NOTHING ELSE.
no swelling. no angry redness. no splotchiness. no hives.
not even one itty bitty bit of puffiness.

i looked nothing like how i felt.
ironic how bug bites have a way of doing that to me.

despite my normal appearance, my face was burning something fierce, so i made a bee-line for an ice pack.

the hubster appeared then. and i told him how that wasp so precisely flew directly into that spot between my head and glasses. and how it stung me and how bad my head was burning and how choked i was that i had NOTHING to show for my pain.

"Like, what are the chances?!" I exclaimed.

to which he dismissively replied, "Actually, that probably happens more often then you'd think."

and i indignantly huffed, "NO WAY! This is NOT normal. This is rare - my experience is UNIQUE. Flukey things ONLY happen to ME. Do NOT take THAT away from me."

and my girl, overhearing our conversation, gasps "AWH poor thing!"

and right as i'm ready to bask in the light of her sympathy she continued,  "She must have been so scared when she got stuck in your glasses.  No wonder she stung you."

The Stinging Take-aways;

1. my girl values the emotional distress of a wasp more than my physical pain
2. i have a propensity for acquiring bug bites that give me pain that is invisible to the naked eye
3. taking selfies is an effective pain management technique
4. i could be a stunt-double for Lisa Kudrow
5. i have had very intense noise sensitivity and brain fog for the past week and a bit. interestingly, 6 hours post-sting, those symptoms suddenly lifted. i am now 24 hours post-sting and am still brain fog and noise sensitivity free. coincidence? maybe or maybe not.

i am currently researching bee venom therapy for lyme disease. i'll keep you posted.