HE CARRIED US

in september 2009, parker (aka sparky) came home from his first day of school feeling sick. within 6 weeks, he was in a wheelchair.

i vividly remember that little blue wheelchair. how tiny it was. how small sparky looked in it. how frail he was.

at the time, it was inconceivable to imagine that he would outgrow that chair and need another. and then another. that over the next 5 years, growth kits, frame sizes and picking colors on the lastest model would be in relation to a wheelchair and not bikes.

i have a vivid recollection of when sparky began to lose control of his legs. he was walking down the school hallway and his legs just kept giving out from under him. he had a dramatic wobbly limp and then every few steps, his jelly legs would buckle and he'd fall to the floor. after a few moments, he would painstakingly push himself off the floor and gripping the wall for support, he would start the whole process of stumbling, falling, picking himself up again all the way down the endless hall to his classroom. it was a terrifying and heartbreaking sight to see. i remember his teacher, who was walking down the hall with us, suddenly grasping my arm and with tears in her eyes and a catch in her throat whispering, "This is breaking my heart."

it was the type of heartbreak that knocked the wind out of you
and it would be like this for the next 5 years.

i don't know how he possessed the gumption to keep going but it is this example of his deep-seated, quiet determination that would help him persevere thru the days, weeks, months and years that followed.

his deterioration happened at lightening speed. in a short 6 week time frame, he went from this stumbling walk to having to rely on a wheelchair to get around. by the end of october, he had to crawl on his hands and knees to get around our home. by november, he could no longer crawl but just pulled himself along on his belly. by december, he had days where he lacked the strength to move at all. he often had to be carried by his dad or brother.

he lost 15lbs in 3 weeks. his eyes became sunken and dulled with pain. he had rashes, migraines, nausea and difficulty breathing. he developed full body tremors and night time incontinence. he endured hallucinations, rages and his cognitive and processing abilities ebbed away. he could no longer hold a pencil or write. he often needed help to feed himself. and then there was the pain. always there was the relentless and agonizing joint pain. no amount of pain medication, IV or otherwise, ever provided relief. 

it is gutting to watch your child suffer and not be able to alleviate it. it chips away at your very soul.

Doctor's notes from Sparky's medical files

these painful memories flood back as vivid as the days and years that they occurred. i write of it now, not out of some macabre sense of dredging up old pain or revisiting old haunts...no, quite the contrary. i look back on these memories and am stunned that we are still standing today. that sparky is standing.

here's the thing. the standing and walking part, well, we don't know if or for how long that will last. we praise God that he has not needed his wheelchair since january 2014 and he has been stably improved since late spring 2014. but this could change in the blink of an eye. you never know with this disease. that is the reality of living with a chronic and incurable disease. there is no cure yet and there is no magical, miracle formula to bring about remission - the fight has been long and arduous...5 years and counting. it has taken 5 years of daily fist fulls of pills, 3 years of daily IV antibiotics, an extensive and exhaustive regime of complementary medicine - homeopathic, herbal and traditional chinese medicine, along with biofeedback and intensive physiotherapy to get to this point. 

and there is still healing ahead of him. and he's not walking out of this battle without the wounds of war following him. one does not lose 5 years of their childhood to a haze of suffering and pain and not have grief and loss to process. and he's wrestling with his faith and his relationship with God. he doesn't see the purpose in all that he has endured but he says that he believes that one day it'll all make sense. and he is keeping his heart and mind open to seeing that. 

when he entered this shadow land of suffering, he was a little boy of nine...now he is emerging as a young man. he will be 15 in a month. he stands tall (taller than momster!) and he is tall in bravery, strength, courage, and spirit.

and that tall in spirit part is the miracle in all of this. that a child at the age of 9 can endure 5 years of relentless suffering and pain, essentially become cut off and shut away from the world and yet come out of this standing tall and unbroken... 

well isn't that the miracle in all of this?

Sparky - August 2014
Overlooking Noth Van from  top of  Lynn Peak

i share this today because i know that there are other momsters out there aching with the wounding that comes from the long nights of nursing the broken, gasping bodies of their babes. 


i know the despair of living the words incurable and chronic. i know the way that reality rips your heart out and then tramples it underfoot.

i know the despair and the terror that fills every fiber of your being and reaches into every recess of your mind when your child looks you dead in the eyes and says he'd rather die than go on living.

i know the horror of hearing your child endlessly screaming in agonizing pain. i know the devastation and heartbreak that follows when your attempts to bring them comfort, relief or solace fail. i know that a little piece of your heart will never ever recover from that. 

i know that their pain is your pain and you will carry it with you until the day that you die. 

i know that there is never enough of you to go around. i know the fear of what incurable and congenital disease means to your future. i know that you worry endlessly about your other children and their future and the future generations to come. i know you fear that if no cure comes, your grand babies may one day suffer.

i know the unwelcome resentments that filter in when you hear other parents complaining about how exhausting it is to drive their kid from activity to activity or get up for early morning practices.

i know how glancing into the car next to you at a stop light and seeing a kid in sports gear makes your heart wrench violently in your chest.

i know that you are exhausted from running IVs at all hours of the night. i know that the only car ride your baby takes is to and from doctors appointments.

i know how you want to scream and rail at how unfair it all is. i know how ashamed you feel to begrudge another parent their healthy child. i know how you feel guilty about that flicking line of resentment that weaves its way up from your knotted gut and lands strangle hold in your throat.

i know that you must be more than just a momster. 

i know the weight of being responsible for making tough medical decisions and that those decisions keep you up at night. i know that sometimes there are no good treatment choices and how you wish for clear cut answers and not choices that include this or that devastating side effects.

i know the hours and hours and hours spent scouring medical files, researching medical literature in order to educate yourself on this thing that has a choke hold on your baby. 

i know that some diseases come with a call to advocacy. i know that that work can burn you out. i know that the desire to educate others, to make a difference, to find a cure, to spare another, to support a newbie is the fire that drives you...even when you have nothing left to give.

i know what its like to live with your heart imploding on a daily basis. i know the screams you stifle, the grief you stuff and the strength it takes to just keep your head above the water. 

i know that you lie on the bathroom floor in a limp exhausted heap in the middle of the night, with silent tears streaming down your face. and you wonder how, just how in the world, will you find the strength to pick yourself up and face another day...let alone, a week, a month, a year, a lifetime. 

i know that the fight to keep your baby alive will take precedence over keeping other relationships alive. i know that you will be judged on this. i know that know one will ever really know how you feel. i know how quickly the crowd will thin exponentially. that who you thought would be your "go to" people at the start will be no where to be found. i know that very few will have the stamina to be there for the long haul. 

i know that unless you have lived the incurable, you cannot understand the sense of loss, the grief, the isolation, the relentlessness, the desperation, and the endlessness of it all.

i know that a childhood shattered by relentless suffering will take you to dark and desperate places. it will challenge your faith in God. it will make you question His Goodness, His faithfulness, His purpose and His plan. it will have you on your knees, face on the floor, fist pounding the earth. i know you will plead with God for mercy. for wisdom. for healing. for guidance. for forbearance. for strength. for relief. and in the most desolate of hours, you will bargain with Him. 

i know that quite possibly the deepest ache, the most pressing heartbreak is the worry that your baby will suffer irreparable damage to their spirit and that they will lose their hope along the way. 

that their suffering will whittle away at the essence of who they are and who they believe themselves to be and how they see themselves in relation the world and to the ONE who created it and them. 

yeah, that. 

perhaps, it is the deepest, most aching worry of a momster. the one that keeps you up at night and presses in hard and heavy on your chest. the kind that makes it hard to breath around. the weight of it refluxing you into a fetal balled position of desperation.

the kind that makes you feel very, very small and very, very helpless.

have courage, dear hearts - the incurable, that curse-able, despicable word that it is, does not have to be that which defines us, our children, or our lives. it does not have to break them...rather it can be the making of them.

how do you survive year 1? year 2? year 3? year 4? year 5 and on - how do you survive a lifetime of the incurable?

how do you survive the endlessness of it all?

you survive by allowing Him to carry you. carry all of it. there is no other way i know how. 

when the snot is pouring out of your nose as fast as the tears are beating a salty path down your cheeks, and you are angry and confused and scared and screaming, "why my kid?", you just have to give it to Him. you give them to Him.  

He carries us because that is who God is. that is what God does. and it is what God did - He sacrificed his son. Jesus, brutally crucified on a cross, His body broken then brought back to life, in order to redeem our broken lives in this broken world. and that allows His supernatural power to take up residence in our lives and that is what keeps us keeping on when the way is so broken and endless. 

it is because of Him and His sacrifice that we have hope. and it is in this that we can find the strength to carry us through. just as we have had to carry our son's broken body over the past 5 years, God has carried us.

this lyme thing, well, it is a horrific journey - i know that the strength we have had to persevere and endure has come from Him. i know He has carried us every. single. step of the way because the pain and the suffering has been so very all encompassing that we could not, cannot, bear it without His supernatural strength to sustain us.

we have the strength to stand today because He carried us.

2 Corinthians 4:7-10 & 16 Amplified Bible (AMP)

7 However, we possess this precious treasure [the divine Light of the Gospel] in frail, human vessels of earth, that the grandeur and exceeding greatness of the power may be shown to be from God and not from ourselves.

8 We are hedged in (pressed) on every side [troubled and oppressed in every way], but not cramped or crushed; we suffer embarrassments and are perplexed and unable to find a way out, but not driven to despair;

9 We are pursued (persecuted and hard driven), but not deserted [to stand alone]; we are struck down to the ground, but never struck out and destroyed;

10 Always carrying about in the body the liability and exposure to the same putting to death that the Lord Jesus suffered, so that the [[a]resurrection] life of Jesus also may be shown forth by and in our bodies.


16 Therefore we do not become discouraged (utterly spiritless, exhausted, and wearied out through fear). Though our outer man is [progressively] decaying and wasting away, yet our inner self is being [progressively] renewed day after day.

WHEN TEACHER BECOMES STUDENT

i've continued to home school sparky this year.

he is now in grade 8.

he got sick at the beginning of grade 5. by january of that grade year, he was no longer able to attend school. grade 6 was a complete write off. he was far too ill to attend school and too cognitively challenged to even work on school at home. last year was the first year we did home-schooling. yes, stepping back into academics...with mom at the helm. scary.

with blood, sweat and a whole lot of tears (on both our parts) he successfully completed the core subjects of grade 7. he is one determined kid.

this fall, he chose to take on science 8, socials 8 and continue working thru math 6. the faculty at the distance ed school that we are utilizing for materials and support, cautioned that they don't normally recommend students do more than 2 courses at a time. and that is the kids without challenges. however, sparky was eager and i did not want to discourage his enthusiasm. 

Gold panning skills in Ft Langley - Sept 2012

so he motored thru all 3 subjects sept and oct....until mid october when the problems with his eyes began and then the subsequent over all deterioration set in. again, we watched this disease snuff out his abilities - brain fog crept in and clouded out thought. brain fog. hmmm. it is more than that. 
so. much. more.
it's irritable brain.
it's inconceivable.
lyme hijacks your brain. 
it's thinking and thinking and not being able to think all at the same time. it's how i used to try to count to 10 but couldn't get past 1. or making it to 3 and then losing count - even tho' i'd kept track with pen and paper

and the worst is the undulating frustration and panic that overtakes you in those moments. the desperation derived from knowing that you no longer know what you knew before has a taste, a smell, a pulse, a thousand physical sensations. forehead crinkled in frustration, tears slide hot fury down your cheeks, throat contracts tight, fist pounds table, pressure squeezes your head from the inside out...until all that is left of you is a huddled up ball, liquid pain washing over scorched body and mind
or
eyes glazed, face contorted, hands claw at air, turned inward toward face, clenched and shaking, mouth gaping as fury searches for its voice. rage builds as pressure deep within until it bubbles and explodes in white, hot fury and walls are pounded, doors slammed, pencils snapped as fevered, flaming brain beats a staccato manic rhythm in your skull, each pulsation presses in and there is no escape as the fury roars forth. 
then comes the nothingness. 
the blank stare. 
the caged feeling. 
the knowledge of life around but no ability to interact. to participate. to find words. to feel feelings. 
the world around you fades into oblivion...until it is but a speck on the horizon of your conscious mind

brain fog. benign description. to know that you no longer know what you knew before.

last spring, we tackled language arts. 

we worked on learning to write a paragraph.

the assignment was to write a descriptive paragraph about onion rings
it took an agonizing 4 weeks for him to construct the following:

then he. me. his tutor. all of us labored through endless sessions of re-writes in order for him to meet the academic requirements necessary to call the task complete.

the difficulty and challenge of it was not because he had missed the teaching on how to construct a paragraph. no, in fact, in many ways, he had already mastered those skills. the following picture is of a paragraph he wrote (without help) on sept 17, 2009...one of the last pieces of work he did before lyme came like a thief in the night and hijacked his body and mind.

no, the skills he had possessed at one time...but lyme put his brain on lock down. it crossed the wires in his brain and snuffed out thought and reason. following a thought from beginning to end were an enormous challenge - never mind, then trying to process a thought enough to write it down.

fast forward now to this past fall.
just before his brain was hi-jacked again.
socials 8 assignment. 
construct a "bone oracle" and write about a day in your life.

Making a tortoise shell oracle

his brain was hi-jacked again within a week or two of writing the essay. and i forgot to celebrate this accomplishment. i got caught in the grip of the grief of watching this unfurling process steal his brain from him again and it's easy in those moments, in those months as they agonizingly drift by, to forget that there have been improvements, change has occurred, that he is still sick, that none of this is normal, yet he is better than he was before...he's come a long way. he is one determined kid.

oracle in process

i re-read his essay this week and i just had to share

The completed project

Hi. I'm Sparky. I'm 12 and I live with my mom, dad, and sister Avery. She is 9 and a pain in the butt but I love her. I, also, have a brother, Taylor. He is 20 and he lives on his own now. I miss him a lot but he comes over to visit. He is an awesome big brother and we have fun playing video games together. Next fall, he is moving to the UK to join the Royal Marines. I have another brother, Harrison. He is definitely not soldier material. That is because he is a dog... a very lazy, fat dog.

I am a rather complex dude. I have an interesting life. In some ways, it is very different than most kids my age...for example; I spend a lot of time with doctors. In fact, I spend so much time in various doctor's offices that I do most of my school work there. Heck, I'm even doing this assignment in a doctor's office! So why do I spend so much time in doctor's offices? Well, it is definitely NOT because of the magazines in the waiting room! When I was 9, I got really sick with several bacteriological infections. The infections are called lyme, babesia, bartonella and mycoplasma. You can get them from the bite of an infected tick. Did you know that ticks can be as small as the period at the end of this sentence? Crazy, huh?

The doctors in the country I live in (Canada) do not know very much about theses diseases and so it took a really long time for them to figure out what was making me so sick. Actually, the doctors in Canada couldn't figure it out! My parents had to take me to a specialist in another country (the USA). I was sick for 6 months before I was finally diagnosed and started on medicine to fight the disease. During that time, the bacteria invaded my brain, spinal cord, organs and tissue. The bacteria that cause my illness are really smart and crafty jerks and are sometimes smarter than the medicine I take to kill them. There is always a major war going on in my body. It makes my bones and brain hurt but I am a fighter and in the end, the bugs will lose.

Aside from warring with bacteria, I'm pretty typical. I like to mountain bike and play basketball. I like to tease my sister. I like to play video games. I like to make stop motion videos. I like to cook and bake.

Hey, why don't I tell you about a typical day in my life in the year 2012?

I wake up and eat my favorite breakfast in the whole world - BACON! I, also, have to take a handful of pills and a liquid medication called mepron. That stuff is so gross! It is like bottled evil! You can't shake the taste. Unfortunately, taking it is a necessary evil!

Then my mom and I go to the doctor's office. I get medicine through IV there. We are generally there for over 3 hours, so I do my school work there. We kinda take over the entire office.

After leaving the doctor's office (aka "my classroom"), I can sometimes sucker my mom in to buying me a pumpkin scone from Starbucks on the way home.
BEST. STARBUCKS TREAT. EVER! They only have them in the Fall. On the drive home, we listen to a band called Mumford and Sons. My brother Taylor got me addicted to listening to them. Actually, my whole family loves them now!

The Cave Lyrics - Mumford and Sons

By the time we get home, it's lunch time. If I had it my way, I would eat a sub sandwich everyday. My favorite kind is turkey with with nearly every topping known to man included on it. MMMMMM, lettuce, cucumber, pickles, peppers, black olives, pickles, tomatoes, jalapenos, and ranch dressing...did I mention pickles, yet? I love pickles!

After lunch, I get some free time. On my free time, I usually play NBA2K13 or minecraft on my xbox. I like playing NBA 2K13 because I love basketball - I have been playing NBA games since I was little. 

Sparky shooting hoops as a wee gaffer

Actually, I have been playing real basketball since I was real little. It is my biggest passion in life. I hope to play it professionally one day. No matter how terrible my illness makes me feel, I try to shoot hoops every day.

Another thing I like to do during my free time, is play with, tease and chase my puppy. His name is Harrison - aka "The Ooshy Booshy Boy". But that doesn't usually work out because he is so super lazy.

In the afternoon, my math tutor, Ronald, comes over. A tutor is kind of like a teacher that comes to your house to help you with school work. He works with me for about 2 hours. After that, I am usually brain dead. However, if my body is feeling okay, then I play some basketball. My favorite game is 21. I like to play with my dad or my brother if he is over.

My favorite dinner meals are ribs or pulled pork sandwiches. Ya....I really like pork! Most of the time, we eat dinner all together as a family around our dinner table. We talk and we tell jokes. If my grandparents are over, we talk "politics". That doesn't generally go so well.

In the evenings, I do more IVs.

THE GOOD: I can do these IVs at home.
THE BAD: My mom hogs the TV and I have to watch stupid TLC shows.

After my IV and taking more pills and gag, more mepron, I head to bed.

So that is a typical day in my life. Some of it is unique to me, like the medical stuff and Lyme Disease. I hope ticks will be extinct in the future or, better yet, I hope that one day there will be a cure for Lyme and all the co-infections. The sickness stuff is just one part of my life. As you can see, when I can, I still do things that regular kid would do - like playing some sports, playing video games, joking around and eating as much bacon as possible. Bye!

today, i celebrate this accomplishment
and
in doing so, i lay aside grief, stare lyme down, and this clears the way for me to see the miracle that this is...

that this disease has not hijacked him. 
 

my kids - 2007

it may steal his mind, his body, his ability but it has not stolen him.
it has not snatched the essence of who he was before lyme.

he has lyme 
but 
it does. not. have. him.
or 
his determination 
his perseverance 
his courage
his dreams
his humor

Grade 1 sporting his coveted "baller 'fro"

his smile 
and
his spirit...
he remains as sweet, soft, and sensitive as he always was.

in march he told me he'd like to grow out his hair so that he can donate it to locks of love. 

in the midst of his suffering, he thinks of others.

i learn a lot from him. 
i set out to teach him but it is he who teaches me.

Sparky and me - Santa Cruz, Feb 2013

HOW IV CAME TO BE

it started this past september (2012) 
a return of anxiety and panic attacks
and
insomnia.
they had all been gone for a long time.
i tried not to panic (ha ha) that they were returning

i tried to look at it very logically.
i did not immediately assign their return as a sign of lyme. or babesia. or bart. no one on my medical team jumped to that conclusion either.

actually i was pretty convinced (and desperately hopeful) that the underlying issue was not infectious but rather Post Traumatic Stress Disorder (PTSD) related.
this made sense. a LOT of sense that these symptoms could have a psychological base. we have had major trauma and a lot of traumatic events have occurred at the start of fall over the last few years... the boys got ill in fall 2009, sparky started iv treatment in fall 2010, sparky underwent a second picc line surgery in fall 2011 whilst i was bed bound with fluid on the brain and on and on..

as we rolled into this fall and sparky began to deteriorate and his eye stuff started, i could feel myself psychologically "bracing" for all hell to break loose. i could physically feel it. my body showed it. i subconsciously held my body in that way - jaw clenched, shoulders raised and hunched, hands squeezed into tight fists. i was braced, standing guard, totally trapped in "fight or flight" mode.

so off to our therapist i went. we have been seeing this counsellor since jan 2011. she is trained in a specific trauma therapy is called Observed Experiential Integration/One Eye Integration (OEI). i do not think but rather i KNOW i would not be in tact had we not found this treasure of a therapist and this powerful therapy. 

OEI has been an incredibly powerful therapy and has aided exponentially in healing the trauma we've experienced on this crazy journey. in a nutshell, our brain remembers stuff and those memories can trigger physical symptoms. trauma forces our brain to process events in an unnatural order and as a result, our brain can get stuck in a neurological looping pattern of 'fight or flight. the problem is only compounded when multiple traumas occur back to back. OEI aids the brain in re-processing the events and breaking the unnatural pattern of neurological looping. in a sense, it helps re-wire the parts of the brain that were set into a frenzied state due to traumatic events. i will be blogging more specifics about OEI therapy in a future post. for the time being, you can find out a bit more about OEI by reading about it here, and read about the OEI theory and case histories here.

i worked hard during my weekly 90 minute sessions. there was so much growth and healing accomplished...i came out of them stronger, more centered and peaceful, feeling lighter and no longer felt like my brain was caught in "flight, fight or freeze" mode. even my posture changed. however, the anxiety/panic attacks continued. like clock work, every 4 weeks, they intensified in duration and frequency. this 4 week cycling of symptoms can be an indicator that lyme is lurking in the shadows. still, i kept doing the psychological work and fighting for my freedom...ever hopeful the anxiety issues were psychologically triggered as opposed to infectious related.

by this point, it was november. we flew down to SF to see DR H at end of november. he felt it was difficult to ascertain whether or not these symptoms were infection driven or not. after all, a 4 week cycling could originate from hormonal imbalances as well. he ordered lab work to have hormone panels done but felt it advisable to start me on one oral abx as i had been off all abx for about 9 months. he rx'd an abx called plaquenil. it treats both babesia and lyme. DR H suspected that if the anxiety/panic was due to infectious cause than babesia would most likely be the culprit.

i started the plaquenil and within 3 days had an intensifying of my symptoms. this lasted for the next 2 weeks...and then they were GONE. POOF. just like that. 100% gone.

it meant one thing.
they had been infection driven.

several weeks later, just after christmas, i came down with a nasty gum infection.
my dentist put me on the abx clindamyacin.
the dose i was prescribed just happens to be very powerful against babesia.
i started the clindamyacin and within 3 days all hell broke loose.

pain. pain. pain.
and
depression. dark, deep depression hit.
i finished off the short 10 day course of treatment. thankfully, my gum infection cleared up. unfortunately, that short course provoked a major herx and set in motion a cascading return of neurological symptoms.

as the weeks rolled on into late january, i went to a very dark and scary place. suicidal ideation returned along with a trickling return of neurological stuff. primarily...pins and needles and electric-like shocks in extremities, other very odd sensations, facial pain, nerve pain and my insomnia got worse and even sleeping pills were not always able to knock me out.

my brain began short circuiting again - i have lapses where i become disoriented and forget how to get to familiar places and number dyslexia. nothing severe but definitely noticeable. when i was at my sickest, i would have memory lapses that caused me to forget what my name was or how to sign my name, or what my kid's names were or their ages, or where i was, or how to open the car door...it is a scary thing...i would go for a walk in our neighborhood and not be able to find my way home (we've lived in the same house for 14 years). so the return of these recent brief, less severe lapses is disconcerting. i remember how terrifying it is to not remember. 

so, long story short
the clindamyacin awoke the sleeping babesia monster
and
i just haven't been the same since.
this how we arrive at the present 
and
the return of IV abx treatment.


oh, yeah, and one other major issue has prompted the need for IV abx treatment.

my barfing...it started march 14, 2012 and it is still ongoing a full year later...the daily churning of my gut has taken many twists and turns over this past year...enough so that i will have to reserve the right to spew that story in an upcoming post.

in light of babs rearing its ugly head and the return of some neurological issues, my docs do think that active lyme, babs or bart may be ONE of the underlying causes of the barfing. whether it is from infection within the gut or mediated from the brain is unknown. DR H suspects the barfing could be partly mediated by an infection in my frontal cortex and/or vagus nerve. hence, the indication to hit me with a course of IV as this is able to penetrate the blood/brain barrier. 

but, wait, DR H is still not convinced that infection is the sole underlying cause of the barfing. there are a few other issues that are under investigation that could be contributing factors. the 2 primary suspects are a mild estrogen dominance imbalance and, of all things obscure, an abdominal migraine disorder. confused, yet?

one thing is for sure, nothing about this is simple. straightforward. nor uncomplicated. my insides are one big, scrambled mish mash of complexity.  

more to come...but for now, i hope i've helped you see how IV came to be.

SHANNON'S SUPER M.U.D

here's my latest M.U.D. (Medical UpDate) and the scoop on the outcome of my appointment with DR H. i have super news to share! 
i have been OFF of all abx since aug 31.

yup, you read that right...i've been OFF both oral and IV abx for nearly 4 months.

i'll give it a moment to sink in... after all, it is mindbogglingly, fantastically awesome news to share.

yup. doing the happy dance.


i have been ON aggressive oral abx treatment since april 2007...and IV abx since jan 2008. so for me to be OFF of abx for the past 4 months and be doing (relatively) well indicates that my lyme and co-infections have been brought down to more manageable levels and my immune system is beginning to do what needs to be done in order to keep them that way. 


clearly, this is huge progress. 


i have NEVER been able to maintain any level of health OFF of abx in the past. often, there has been a very fast deterioration and a very rapid return of debilitating symptoms during previous trial runs of drug holidays. if co-infections are at a high load, lyme rears its ugly head very rapidly upon withdrawal of abx treatment. however, this has not been the case with me this time. we've not seen any indication of a regression. in fact, i am actually continuing to get stronger and improve. that is an awesome and remarkable gift. DR H believes that this is a good indication that we have finally beaten both my babesia and bartonella infections into submission. at my appointment, there was no talk of "remission" for either of those infections or lyme but i'll take a rendering of "submission" for the time being. that sounds like music to my ears and for now, DR H is continuing to keep me OFF of ABX! HOW AMAZING! 

PORTRAIT OF SUBMISSIVE BUGS

i am not able to go so far as to have my PICC line removed. we are not at that stage yet. DR H is concerned that my body is in a sort of 'holding pattern' right now - and that the scales could easily tip either way. partly, because we've seen improvement with me before...only to have it followed by a regression of epic proportions. even tho' i'm doing better and am getting stronger, DR H is very concerned that i am in a very fragile state...after all, my nutritional intake is so super restricted...it's pretty much a non-nutrient intake actually. this does not bode well for building my body's strength or defenses.


since september, i have been intensely reactive to and unable to eat any fruits and veggies. this is certainly no way for anyone to be at the best of times let alone when one is needing to eat in order to build up and strengthen the immune system. this is a critical and crucial time. my body needs to be fueled properly in order to keep fighting...and yet, right now, eating healthfully makes me terribly ill and toxic. i know, right? so bizarre.

basically, i can eat meat and simple carbs...simple being the operative as even complex carbs are triggering toxic side effects with me. i have to watch my fat intake because i have above normal levels of lipids (fat) in my blood. even more bizarre. i am like a skinny fat person.  the food re-activity is confusing and frustrating. i LOVE vegetables. that is what my body has always naturally gravitated to...and now, they are quite literally the death of me. so what's a girl to do? for starters, the short term plan is that i will be on on IVs to address my nutritional deficiencies and supplement several of my depleted mineral levels.

and long term? am i looking at a future devoid of fruits and veggies? i can't imagine. but no one really knows what to do with me. over the next little while, DR H is going to be networking with some colleagues to figure it out. we do know that this is most likely related to my mast cell disorder. and if i start to explain THAT, this post will morph into a lengthy and very confusing scientific journal entry...while it is complex to explain, it is all rather fascinating (to me, anyway) so i'm working on a post that'll explain it as simply as possible as soon as possible.


there is much more to talk of...in addition to dealing with my nutritional needs, over the next several weeks my treatment will be primarily focussed on bringing down my viral load (which is very high), and addressing my immune deficiencies (i have issues with both igA and igG deficiencies) and tweaking the meds that are part of the treatment protocol i am on for my MCAD/mast cell disorder.


am i done with abx treatment for good? no. DR H believes i'll still need another round of IV. not sure when and not sure for how long. am i out of the woods yet? no... but PRAISE GOD, there is LIGHT! i feel it. i know we've been at the place before where we dared to think that we could see a pinprick of light at the end of this long, dark tunnel only to fall down the rabbit hole again.

but i'm more hopeful than i've ever been before that my improvements thus far are and will be sustainable...that hope filled confidence truly came to light for me about a week ago.


i was crawling into bed one night and as i was doing so, i had a very odd thought flash thru my mind. i was thinking about how i couldn't wait for the 'morrow. it stopped me short in my tracks...


'hold on,' i thought, 'why am i feeling excited about tomorrow? i have no special plans.' 
i nearly toppled out of bed when i realized that it was because i wasn't dreading the day to come...the 'morrow no longer felt like a dreadful burden to bear. 

and then the flood gates were released and the tears poured forth... as they do again as i write this and re-live that strange, foreign, amazingly wonderful moment when i experienced the simple pleasure of just being alive. 


i haven't felt that way in 6 years.


i do believe it is the dawning of a new day. 

SPARKY'S M.U.D

here's the M.U.D (Medical UpDate) on parker:


i guess the biggest news i can lead out with is that we will be stopping parker's IV treatment sometime in the beginning of january - possibly the first week. what a way to ring in the new year! parker has had a total of 16 months of IV treatment and is looking forward to being free of a PICC and all that it entails.

"viral picc" is going bye-bye!

this is a big deal and a step forward albeit pulling the PICC line and stopping IV treatment isn't because DR H feels parker is done with IV - rather parker's  naughty PICC, (whom he named viral picc,) and the development of collateral veins is forcing the decision to end IV.

parker's collateral veins

HOWEVER, DR H is hopeful that parker's symptoms and improvement will be sustainable with oral abx. AND that is exciting! 4 months ago, when parker's original picc, whom he named raymond PICC-aso, suddenly became no longer viable, we HAD to move forward with getting it replaced...without question he needed to remain on IV treatment. so while the PICC removal is premature, it is still a big deal and a "WHOOP! WHOOP!" because we think we can make it without it! 

viral picc and his pad during a lymph leak 

we are ALL looking forward to bidding viral picc farewell. he has been a very naughty and stressful PICC to live with - he's forced us to deal with lymph leaks, blood clots and bleed outs -  additionally, keeping up with the rigors of an IV schedule (at times parker's IV treatment was every 8 hours round the clock) is incredibly exhausting. parker is most looking forward to being able to fully submerge in a tub...(a PICC can't get wet) bathing with your arm above your head is not too relaxing. 


before the PICC removal takes place, DR H wants parker on one last very intensive IV treatment regime. this will be added into his existing treatment regime over the next week. once everything is incorporated, we will blast away on the new protocol for a solid 2 weeks. DR H has already prescribed a plan for the oral treatment that will follow. we have a phone appt with DR H on jan 3 as it is expected that there will need to be some adjustments and tweaking made - some of which is dependent on his response to this last course of IV treatment. 


it is very clear that parker must still be on abx. he is greatly improved but we are not out of the woods yet. not by a long shot. if he begins to decline on the oral treatment than we will have to resume IV treatment and because a PICC line is no longer an viable option, this would mean that he would have to have an IV PORT. (this is an IV device that is surgically implanted under the skin). we are hopeful that we and he never have to face that. currently, his most vicious infection is the babesia - and there are many potent oral medication options used to treat it.


way back in october, DR H (temporarily) stopped parker's antiobiotic treatment while we got the mast cell treatment protocol underway.
the reason this was done was two-fold:


first, it was done so as not to muddy the waters, so to speak. we needed to have a clear clinical view as to whether or not the symptoms that were suspected of being mast cell related were responding to the specific treatment for it. there is much cross over b/n the symptoms of lyme and systemic mast cell disorders. we were pretty certain which symptoms were mast cell related and which were lyme/babesia related but it was important to get as clear a picture as possible. (is that clear as mud!)


secondly, it is not unusual practice for a LLMD to put a patient on an "abx holiday" or to "pulse" abx - this gives the patient's body a rest from the meds and helps the physician re-evaluate the patient's health and symptoms. the goal of treatment is to put the infection into remission and kick start and support the immune system into taking over. the response of the patient during these drug holidays helps guide the physician in deciphering what the next step in treatment is needed and how best to address the specific needs of their patient.


during the four weeks that parker was off of the abx, we saw a positive response in the symptoms that were suspected of MCAD. primarily, these are flushing, loopiness/psychiatric outbursts immediately following any considerable exertion, mystery spots, chest/heart pain and syncope-like episodes (near fainting/blackouts). there was some lessening of his joint pain as well. it was wonderful to see such a remarkable improvement in those symptoms! however, his babesia/lyme related symptoms became more pronounced and his overall health deteriorated. once he was re-started on the IV and oral abx used to specifically treat babesia, he improved...albeit had to endure some pretty rough herxing. a wonderful and unexpected bonus of the MCAD treatment, is that his herxing has been less intense and better managed.


in fact, the MCAD/masto diagnosis really is the missing link to several symptoms that have puzzled and troubled DR H and DR D for quite some time. back in spring of this year, DR H kept remarking that he felt like he was "missing something" with parker. it is good to have found the missing piece to the puzzle. we are hopeful that parker's fight against lyme and babesia will be a little more straightforward and a little less complicated now that his MCAD/masto is being treated.


there is more dirt on parker but i think if i write any more at this point, it'll be clear about as mud...