KEEP CALM & IV ON

after a 19 month hiatus, i re-started IV abx treatment this past week.

hiatus is not the correct term. a hiatus implies a 'break' from something. IV abx treatment was not something i had anticipated going back on. not ever.

we stopped my IV abx treatment in august 2011...but did not remove my PICC line until february 2012. that was the time frame that i considered the hiatus...i had never done well off of IV, so we kept my line as a safety net. as  the weeks off IV rolled by, my health amazingly remained stable.  by february, DR H felt that it was "safe" to remove my PICC line.

the removal of my PICC line was a momentous occasion. at the time of it's removal, i had completed 4 YEARS of IV. somehow the fact that it's removal occurred on leap day made it all the more special and symbolic. (READ about that day here.) while i was not declared in remission, it was a tangible sign that i was moving from actively fighting this disease to the recovery phase. 

after spending the last 19 months with the mind set that i am in a recovery phase, i now find myself confronted with the need for aggressive treatment again. (the how and why IV has been deemed necessary again is coming in another post). 

hence, i find myself re-starting that which i thought had been put to rest. when we saw DR H at the end of Feb, i fully expected that he would prescribe a new round of oral abx (i had already been re-started on one oral abx - plaquenil - back in november) but i was not expecting to be put on IV again. NO. not in a million years was i prepared for that. i did not fully process it when DR H told me. i know i felt relieved that it would be pulsed treatment (pulsed meaning only short courses - one week per month . pulsing is a strategic treatment regime aimed at hitting the bugs when they are most susceptible to the action of the antibiotics.) yet, i think i was so focused on what lay before us with parker's balls to wall treatment that i could not confront what lay before me for me. i know i wrote about it and said it was 'no big deal' but that was me putting on a brave face. truth be told, it was a total blow. i really didn't even want to talk about it or elaborate as that would make it too real.

my IV treatment was scheduled to start last saturday. i had a peripheral line placed on saturday by a local ND, DR C, who is working with DR H to provide care for both sparky and i. i was supposed to start my IV meds that same day but just could not shore up the courage to do it.

i put it off until the following day.

sunday dawned. 
i knew i could no longer delay the inevitable. 
i had to face this head on. 
i reconstituted my meds, took a deep breath and hooked myself up. as i sat there watching the meds drip into the chamber of the IV set, reality set in.
i had just re-opened a chapter of my life that i thought i had permanently closed.

i sat there contemplating that. 
it was overwhelming to think about. wondering why and how do i face this all. how bad will i herx? will i become insanely debilitated again? sparky has just started intense treatment, how will we cope with the fall out of this? practically speaking, do i even have the strength and stamina to embark on my own demanding treatment protocol whilst juggling my son's complicated schedule? my IV treatment will include infusions every 8 hours - so 3 IVs per day for me and sparky is on 5 a day. they each take 30-60 minutes to infuse. that is 8 hours of IV per day. never mind the time it takes to re-constitute the meds nor trying to fit in the multiple medical appointments we need to go to each week.

IV treatment laid out for the day

the reality of it all pressed in on me.
i just sat there staring at my line, feeling numb and very alone... and then a trumpet blast pierced the silence. no, it was not the Lord returning...the trumpet call is my text ringtone. yet, i very well consider that what occurred next was from the Lord.

the text was from a dear friend asking if she could drop in that afternoon.
her visit could not have been more perfectly timed. i needed to not be alone that day. but no one knew that. 

then when she arrived, she had her 2 beautiful girls with her. my kids ADORE her girls. their arrival immediately perked up sparky. while my friend and i visited, i was so aware of the chattering of the kids. and their laughter.  my sparky had a twinkle in his eye and smile upon his face. that, along with the companionship of my friend, buoyed my spirit. the visit, in and of itself, was good medicine for my soul.

yet it do not stop there. 

my friend is a "doer". time and time again, she has used her gift of helps to come alongside us in practical ways. this day was no exception. she used her gifting of helps to come alongside us in a way that truly left us speechless.

later on that same afternoon, my son taylor stopped by for a visit. he walked in with a bag, handed it to me and said, "here mom, i bought this for you."

a gift! for me? from my son. how THRILLING!

i opened it and low and behold it contained a little teapot and mug...

my friend's visit, her sweet girls' friendship to my children, their generosity and companionship, and my new mug and teapot from my tenderhearted son just seemed to be God's way of whispering,

"i've got you covered. i'm here. it's gonna be ok. 

just 

KEEP CALM AND IV ON"

CARRY ME

we are home from SF. 

today we got the ball rolling on sparky's "balls to the wall" treatment. it's now full steam ahead. the following "menu" will be served up 3 times per day for the next 6 weeks. 

intense die-offs, called Jarisch-Herxeimer reactions (aka herxes), are expected and they are horrendous to live thru. a herx occurs when the medication hits it's intended target (the bugs) and kills them. the death of the bugs results in  a nasty mix of toxins being released into the bloodstream and can create neuro-toxicity. it is the toxins circulating in the bloodstream that produce an intensifying of all ready present symptoms and/or can elicit the presence of new symptoms. 

a herx associated with the treatment of lyme is most often seen at around the 72 hour mark of the start of treatment and again at around 3-4 week mark. that being said, everyone herxes slightly different... the health of a person's detox pathways, bio-chemical make up and effectiveness of detox regime all impact the duration and intensity of herxing. one of the particular medications sparky will be starting is very powerful against the cyst form of lyme. for this reason it can cause very intense and prolonged herx reactions.

sparky's herxing has always produced very intense psychiatric manifestations - hallucinations, psychosis, rages, confusion, delirium, suicidal ideation, self harming. the most intense physical symptoms are joint pain, nausea, tremors, chest pain and migraines. the most intense period of herxing was when we first initiated IV treatment back in the fall of 2010. the worst of it lasted for 3 months straight. his symptoms were so severe that we could not leave him unattended at all. as we re-enter the aggressive IV treatment arena, our thoughts return to those very dark days and we know that we must prepare for the possibility of re-living that. sparky has little re-collection of the worst of those months however he does have an awareness of having been in a very scary state of mind. as futile as it may be, we are doing our best to try to prepare him and us for the possibility that we may find ourselves catapulted back in to this valley of the shadow of death, this darkest of dark places where mind and body are held hostage, encapsulated in what truly can only best be described as hell on earth. we are all aware of our deep, desperate need for God to carry us now.

we would appreciate prayers for endurance, perseverance and healing as we slay the bugs.

it is difficult to head into a treatment that we know will temporarily make him sicker and weaker than he already is - and we have no guarantee that this treatment will have the desired results. should this treatment fail, DR H has indicated that we will be between a rock and hard place. that was difficult news to hear. more than ever, we are aware of our desperate need for God's hand of healing over our lives. our prayer is that this combo of meds will be the method by which God delivers restoration and healing to sparky's body.

the words of the following song will be our anthem as we move thru the next 6 weeks.

carry me

i try to catch my breath
it hasn't happened yet
i'm wide awake in the middle of the night scared to death
so i prayed God, would you make this stop?
Father, please hold on the me, You're all i've got

carry me, carry me, carry me now
from my sinking sand to Your solid ground
the only way i'm ever gonna make it out
is if you carry me, carry me, carry me now
God, carry me, carry me, carry me

Jesus, calm my heart
come near me please
Lord, don't let these worries get the best of me
Oh, i believe, that You're still here with me
cause You meant what You said when You said You'd never leave me

carry me, carry me, carry me now
from my sinking sand to your solid ground
the only way i'm ever gonna make it out
is if You carry me, carry me, carry me now
God carry me, carry me, carry me now

i'm at the end of myself
i know i've got nothing left
feels like i'm stuck in the valley of the shadow of death
and i've been down here so long
i just can't find my way out
oh, God, i don't stand a chance
unless You carry me now
God carry me now

BALLS TO THE WALL

"It's balls to the wall time." 

those words spoken by DR H at the end of our appointment on wednesday. this in reference to the very aggressive treatment plan he is implementing for parker. 

once again, we're down in SF. it's hard to believe we're back again. we arrived monday and will be here until saturday. last time we were here was at the end of november. 3 months have come and gone in a blur. when we checked into our hotel (we stay at the same one each time) the manager greeted us with "hey, the celebrities are back." 

yikes. that's right! last time we were here, we had the Nature of Things camera crew in tow. reminds me that i have yet to post about our whole filming experience. sheesh. 

it is no surprise that the results of parker's exam were troublesome. the downward spiral he's been on since fall has taken it's toll. going in to this appointment, we knew he was doing poorly - even a quick glance gives that a way. he's puffy, black under the eyes, flushed, has had a return of  tremors and twitching, involuntary movements in his upper body and neck area and when he does walk, it is with a pronounced limp. his joints are swollen, his spleen is swollen and he has multiple abnormalities upon neurological exam. it is all indicative that current treatment protocols are failing to keep his infections in check. so, as DR H said, "it is balls to the wall" time. 2 new drugs. 5 IVs per day. and an interesting and a nasty tasting concoction of homeopathic remedies. also, on the docket, a possible trip to connecticut. yes. connecticut.

as soon as parker heard that, he quipped infamous lines from a favorite family movie, madagascar:

"you want to go to connecticut? connecticut?! 

what does connecticut have to offer that new york doesn't?" 

"lyme disease."

what connecticut has to offer us is a neurologist that specializes in treating lyme (and PANS - Pediatric Acute-onset Neuropsychiatric Syndrome) with IVIG treatment.

the cost of this treatment is exorbitant. 10 to 15 grand PER month.

so connecticut also offers us bankruptcy. ha ha. not funny.


IVIG is short for Intravenous Immunoglobulin. here's a very brief, over- simplified explanation; the immune system is made up of certain types of antibodies that help keep our immune system strong, healthy and able to fight off bacterial and viral infections. 3 of the really important immunoglobulins are IgA, IgM, and IgG. 

IVIG is a treatment that is a blood product that contains the immunoglobulin antibody G (IgG). IVIG is primarily used to treat certain autoimmune diseases and immune deficiencies. in the USA, it is also being used to help treat lyme and PANS/Pediatric Acute-onset Neuropsychiatric Syndrome patients. (Parker is on the PANS spectrum). Simply put, it helps to replenish/build up the IgG deficient part of the immune system which in turn helps the body fight the infection and makes the antibiotics more effective. IVIG also aids in recovery of peripheral neuropathies. 

using IVIG in the fight against lyme and PANS is standard care in some parts of the USA, including stanford children's hospital, which is in the process of opening up a IVIG Clinic to treat PANS. unfortunately, canada has yet to catch up. to receive IVIG therapy in canada, one must have a diagnosed autoimmune disease or an immunodeficiency.

here's the rub...parker sits right on the borderline thresh hold for meeting the criteria for an immune deficiency in canada.  he has almost no IgA, low IgM and an abnormal CD19+ count however his IgG is right on the cut off between normal and too low...we're talking literally just by hundredths of a point. because it is right on the cusp, he theoretically could still receive IVIG... IF he had a history of chronic infections. yes. that's right. a history of chronic infections. there in lies the absolute absurdity of it all. our medical system does not recognize lyme as a persistent, chronic infection. therefore, the immunologist that we have been seeing will not acknowledge his history. 

we have fought hard to advocate for him to receive this treatment in canada. insurance would cover it then. his immunologist has been unmoved. his response to our request that he speak with DR H about parker's case was met with a, "i'm very busy. i don't have time to call him." that was a bitter pill to swallow. he eventually did put in one call to DR H. unfortunately, he just left a message and has not returned any of DR H's subsequent calls. DR H will keep trying. 3 separate lyme specialists have all determined that there is a strong likelihood that parker would have a positive response to IVIG therapy. it is upsetting that the immunologist is so reticent to even hear out these expert's opinions. in the meantime, parker is suffering and we can't indefinitely wait on the hope that things will change here in Canada in a timely matter. hence the possible trip to connecticut.

the last 3 months have just been exceptionally difficult and somewhere round the middle of December, i got sidelined with a significant bout of depression.  in part, this is why my blog has suffered. of course, juggling the many hats i must wear - teacher, nurse, caregiver, wife, mom - is a challenge that seems to consume the entirety of every day. just tending to the parker's medical needs is a full time job in and of itself. i have no time to be a patient myself. the high level of stress and turmoil are not exactly conducive to healing either. neither is the barfing and food allergies. yes, my daily bouts of barfing have not stopped. on march 14th, i will have barfed my way thru an entire year. i was not surprised when my exam on monday, revealed that there has been a relapse of my lyme infection. i am only allowing it to be coined "a small one". however it does require a re-treatment of IV meds. (i have been off all IV meds since Aug 2011) for now, the treatment plan is for pulsed IV therapy - just 5 days per month. no big deal. 

there is more to update. there has been a whole rash of events that have occurred over the past 3 months. more to come...eventually. 

for today, it's balls to the wall time. parker's new treatment regime is off and running. we spent about 4 hours at the IV clinic at DR H's office. it went as well as can be expected...meaning parker feels horrendous but thankfully had no adverse reactions. once we are back home, we will continue this regime for the next 6 weeks under the care of a local lyme literate ND (LLND). it will be grueling for all of us. especially for parker. 

thank you to those of you who continue to stand with us in prayer and other tangible ways. over the last little while, many of you have been much more vocal in your support. i cannot adequately express how much it means to us and how much it bolsters our spirit when we hear from friends. please never underestimate or think that a simple message of, "i'm praying" or "thoughts are with you" is inadequate. for they are not.  

we are exponentially grateful to each of you. 

i will end this post by sharing a little letter that avery wrote the other day.