HEALING IRON MAN

{comedy is a necessity to get through life with the fewest scars. 

humor is the best antidote to help relieve struggles.}

                                                                        ~Suzy Kassem

the boy has started physio to rehab his broken collarbone from his mountain bike crash. His therapist sent him home with a list of daily exercises....naturally the Hubster had to add in his own two cents. 

where would we be without the hubster's humor, eh?

sparky's incision & collarbone are healing well and range of motion in his arm/shoulder is back to nearly 100%. we are amazed at how quickly his body is recovering from this injury. it has actually been very odd to experience such a rapid and uncomplicated recovery process.

this is not in our realm of normal. 

healing from (chronic) Lyme is so vastly different.  fighting chronic Lyme is complex, frustrating and never follows a predictable pattern. it is an arduous marathon of "one step forward, two steps back"... it takes an iron will, body and mind to battle this disease.

it is a journey that sparky has been battling his way through for nearly 7 YEARS now. we are grateful that he has been doing better since the end of february (2016). he has "good" days and "bad" days - most days are still a grinding uphill slog. his current treatment protocol has helped reduce his joint pain and as a result he is sleeping better. he has also gained back 10 of the 20lbs he lost this past fall. less pain, more sleep & weight gain mean that he is stronger & able to get out for small amounts of time and/or attend school for a few hours per week. we do not take these gains lightly - they are significant and we are relieved that he is no longer deteriorating. however, he continues to spend a good deal of time in bed due to profound fatigue, brain fog, headaches and noise sensitivity. some days these symptoms are very intense & disabling.

his medical team is still working to uncover what set off his relapse and rapid decline this past year. and find a treatment protocol that will help his remaining symptoms. his mountain biking crash temporarily side-lined further investigation as well as delayed treatment. IRONically, he had been undergoing heavy metal detox protocol at the time of his accident. so there we were trying to move metals out and there he went getting metals put in. funny. not funny.

heavy metal detox can be hard on the body so this treatment was tabled while he recovered from his surgery. now that his body is healing from that we are finally able to move forward with more aggressive treatment.

on thursday we will be travelling to Seattle, Washington. he is scheduled to have a two hour appointment with one of his Lyme docs as well as undergo additional testing and treatments in the clinic there. the following week we have an appointment with DR H (this is phone appointment. we are not going to SF at this time). 

we are hopeful that as a result of these appointments, he will have a treatment plan that will address his infections, his mitochondrial deficits, and heavy metal toxicity & other underlying co-morbid issues that are continuing to cause him such disabling symptoms. we know this is going to be a tough course and we have to target each thing one step at a time in order to heal our iron man.

ok i feel like i should some how close this post with something funny or lighthearted. especially since i started it with humor. but i'm just sitting here like, "ummm, hmmmmm... nope, nada. i got nothing more to add." 

my heart is heavy as lead. 

here's the thing. some days we can laugh and find the humor in all of this. other days we cannot. some days we find ourselves laughing and crying. today is that sort of day. this is hard. we are so worried about our boy - his present and his future. we so desperately hope and pray for healing for our iron man. 

but, ok. here we go. as we road trip tomorrow, we'll be listening to the comedian jim gaffigan. he's worth a laugh or two or three. check out his McDonalds rant here or search him out on youtube. 

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.