HOW YOU CAN HELP

This week a major news story about Lyme Disease broke here in BC. it made the front page of the vancouver sun newspaper.

BC DOCTORS LACK ABILITY TO DIAGNOSE LYME DISEASE

in a nutshell, a confidential, internal report about lyme disease in BC that was commissioned by the BC government came to see the light of day this week. this report proved what lyme patients across the country have been saying for years - that the current testing is flawed and inadequate and is used mainly to deny patients access to treatment.

the report also revealed:

"the majority of GP's lack knowledge about LD"
"testing is poor...better testing is needed to prevent progression to chronic disease"
"no treatment for chronic LD patients"
"the current state of diagnostic methods for chronic LD and other related tick borne infections is inadequate"

the report goes on the make 8 recommendations for change to be made in our province. you can read the report in full by clicking on the following is link: the 8 recommendations cited in the report start on page 44

SCHMIDT REPORT ON LYME IN BC:

following day, mike farnworth, a leading NDP candidate endorsed all of the report's excellent recommendations and called for action from the BC government to follow through with them. here is the link to that:

OPEN LETTER TO THE HEALTH MINISTER

less than 24 hours later the government released a statement saying they have pledged 2 million dollars to fund research for chronic diseases - CFS, fibromyalgia and lyme disease

BC GOVERNMENT PLEDGES 2 MILLION

this is all great and exciting news. the truth is FINALLY coming to light. it is the start of a new day for lyme sufferers in BC (and hopefully across canada). we are possibly on the cusp of a huge breakthrough in the lyme community - but we need your help to keep this moving in the right direction!

HERE'S HOW YOU CAN HELP:

here is an opportunity to get involved - if there ever was a time when we needed for people to make their voices heard on our behalf and on the behalf of those so devastatingly impacted by this disease, it is NOW.

for those that can, please write letters, send emails, make phone calls - there are two critical areas of concern that need to be addressed:

1. please hold the government accountable in following through on the recommendations made in the report. click here to read the 8 recommendations (start on page 44).

2. ask, beg, demand that the lyme disease community is represented at the research table - specifically the Canadian Lyme Disease Foundation (canlyme). it is far too easy to direct research in such a fashion as to give erroneous data. we have seen this happen in the USA with the IDSA panelists who refused to review or take into account the medical research and peer reviewed literature that proves the existence of Chronic Lyme infection.

to date, canlyme has not been invited to participate in this ground breaking research initiative - despite their repeated requests to do so. WHY? Please do not allow our government to take a biased, one sided approach to their research. the lives of many canadians depend on that.

at the end of this blog post, you can find links where YOU can make YOUR VOICE heard. Please! this is so important to our family. change is so desperately needed. we do not want more families to go through what we have and continue to go through. it is imperative that the government implement the recommendations put forth in the SCHMIDT report. the lives of so many Canadians depend on it.

if you don't know where to start or what to say, the following is a letter that friends of our family wrote to the minister of health. they have given me their permission to publish it here. you are free to "use" this as a "form letter" or use it as a jumping off point to write your own letter.

Dear Minister Dejong,

We are writing to express our huge disappointment in how the diagnosis and treatment of Lyme Disease is handled in our province. We personally know a number of people suffering from Lyme who have had to travel to the States for appropriate diagnosis and treatment, at great physical, emotional and financial cost.

Our province's position on Lyme has resulted in maintaining inadequate testing for Lyme. Doctors in BC are woefully uninformed about Lyme, and put their medical licences at risk if they treat Lyme patients.

We have always been proud of our medical system, but observing how our country and province deal with Lyme patients has changed that pride to profound shame and frustration.

The recent government report highlights the fact that we need better diagnostic testing, and that doctors need more training so that Lyme can be treated easily when caught in the early stages. Waiting for years for correct diagnosis and treatment is creating an unnecessary drain on our medical system, and is devastating the lives of Lyme sufferers.

There is a great opportunity here for the government to acknowledge the injustice provided to people with Lyme and their families, and to immediately begin to implement measures to change the current deplorable situation. Many lives depend on your response.

Thank you for your consideration,

Susan and Ian Chubb

write a letter. send an email. make a phone call. please.

no child should hear;
"i know you have a life threatening illness but i'm sorry, i can't risk my license to treat you."
but that is what a pediatric doc at BCCH said to our son parker

no child should hear;
"yes, i know your lab came back positive for a tick borne infection but i'm not going to treat you! go see your guy in the USA . get him to treat you."
but that was what our family doctor of 19 years said to our son taylor upon admission that he had a positive test result for an active tick borne infection.

help us advocate, lobby and push for positive change for the diagnosis and treatment of Lyme in BC and all of Canada - so that no more families and children will suffer at the hands of an ignorant and inadequate system which is based on antiquated medical literature and biased "scientific opinion".

on behalf of our family, we would like to send out a HUGE THANK YOU to lyme warriors, LLMD's and those who have and continue to advocate for change on behalf of the lyme community. and thank you to those of you who continue to support, encourage, pray and unwaveringly stand with us on this journey. we are humbled.

"never doubt that a small group of thoughtful, committed citizens can change the world. indeed, it is the only thing that ever has." -margaret mead

vancouver sun reporter who broke story:
pfayerman@vancouversun.com

editor at the vancouver sun:
sunletters@vancouversun.com

editor at the globe and mail:
newsroom@globeandmail.com

health minister, mike dejong
email: mike.dejong.mla@leg.bc.ca
phone: 250-953-3547

drop your local MLA a line:
MLA FINDER

BELIEVE IT OR NOT

believe it or not, the flu has struck our home...again.
unbelievable. i know.
high fevers. headaches. ear aches. super sore throat and wretched cough.
our home has become a revolving door for this stupid flu that won't go away.
avery was home from school with it last week
and
taylor hasn't spiked a fever but nonetheless he's been feeling pretty wretched and has spent a lot of the past week in bed
and
parker woke up with it saturday morning.
he was sick. sick. sick. i was still biding most of my time flat on my back. and graham was working. needless to say, saturday was a really longgggggg day.

today we left for seattle. we have appointments with DR D tomorrow. the past 2 weeks have been pretty grim for me and when parker came down with the flu on saturday, i was wondering just how in the world we were going to manage the 2.5 hour drive down to seattle. but it never ceases to amaze me how rapidly things can change with our conditions.

by yesterday, both parker and i were significantly improved. i am so thankful for that. our drive down was fairly uneventful. and believe it or not, i even had the energy to pop into a ross dress for less on the way down. that was nice. about the last time i was out and about (other than going to doctor's appointments) was when we were in SF 5 weeks ago. believe it or not, about the only thing i did while we were there (other than going to doctor's appointments) was popping in to a ross dress for less. i think i see a pattern developing.

have a herx.
get the flu.
shop at ross.
have a herx.
get the flu.
shop at ross.

is ross the cure or the curse?
graham would say it's a curse.
i would beg to disagree.

i am currently writing this from our hotel room in seattle where, believe it or not, i just christened the porcelain bowl with a round of barfing. great. just great. i'm not sure if it's the flu or not. after all, i've been barfing for the past 4 months. i suspect it could be the flu tho' as my regular barfing is usually accompanied by pretty vile retching - this time around i kept that down to a dull roar. did i mention we're staying at the red LION hotel? ha ha.

avery has recovered from her bout with the flu and graham has not succumbed to it...yet. however, i'm barfing and parker is hacking up a lung and considering we're all cooped up in a tiny hotel room, i'm sure it's just a matter of time before one or both of them come down with it. altho' avery is taking precautions... and has sequestered herself in the closet. yes. she doesn't want to share a bed with parker so, believe it or not, she's sleeping in the closet.

avery's closet accommodations

taylor stayed home this time. poor guy had to drag himself to work today. we're sad he's there and we're here but i'm sure he's glad to have a little peace and quiet. taylor's girlfriend, mara, volunteered to babysit harrison while we are away. and her parent's very generously opened up their home to our furry baby. i think it was a very big deal for her parent's to "allow" a dog to stay at their home. i'd hazard a guess, that their regretting that decision about now.

harrison and mara

apparently, he peed on their carpet the first hour he was there. i can't believe it! yup, he took a whizz on those poor people's beautiful, pristine white carpet. believe it or not, he's not had an accident in months. way to make a first impression, harrison. i wouldn't be surprised at all, if mara's mom and dad kick you to the curb.

well, i'm off to barf and then off to bed.
and
tomorrow, we'll see DR D
and
maybe, just maybe, barfing and all, i'll pop into another ross afterward

SOMEWHERE IN THE MIDDLE

i am somewhere in the middle.
my brain somewhere in no man's land.

that is the great nugget of wisdom coming from DR H when i spoke to him via phone earlier this week. it's only been 4 weeks since we saw him in office in SF. but pretty much all hell has broken loose since our return. and most of that in my brain. naturally, hindsight is 20/20, and now i can see how the downward spiral began already while we were still in SF.

i kept blaming the internal head pressure and increasing sensitivity to noise on that sinus/ear infection i came down with in the days before our trip. it wasn't completely illogical to think that. and the migraine i got our 3rd day in SF, well, i just chalked that up to just being run down, nutritionally deficient and the stress of travel etc. etc. etc. but...

even tho' we were away, i couldn't relax. even though, i was tired, i couldn't sit still. even though i was exhausted, i couldn't sleep (even with sleeping pills). even tho' we were away, i was just super agitated and felt "over caffeinated". every day. all day long. i spent a lot of time pacing around our hotel room.

all of that should have made me sit up and take notice.
it didn't.
and when the sound of the drapes being opened in the hotel room beside us jarred me awake and made me jump. well, THAT should have been the red flag that more than just a bad cold was the issue.

but i didn't clue in
i didn't WANT to clue in
i am just so super sick of being sick and tired that i figured maybe if i just ignored it, it would all go away
and if i just soldiered on, i could push through it
after all, it was "only" a cold
so i kept going and ignoring and trying to 'behave' myself well

and over the past 4 weeks everything just got increasingly worse
and
the noise and head stuff became increasingly difficult to ignore
in order to "function" i had to wear earplugs
but
i didn't really 'think' about it
it's just what i had to do to get by
and
i just kept rationalizing it all away as the cold that just wouldn't let up

it's weird how the abnormal can become normal
i was startling easily
and
i was exhausted
and
i was running a steady low grade fever
and
i felt like my head would implode
and
i even with ear plugs in i was cringing at every little sound
and
i felt jacked up and over caffeinated
and
i had tremors and twitches
and
i'm super over emotional
but
hey, i'm just over tired and it's just a bad cold, right?

so i just pushed through it
after all,
i HAD to soldier thru
because
there were teacher conferences to go to
and
doctor appointments to go to
and
prescriptions to fill
and
then
it
happened

my body revolted
and
my brain melted down

2 weeks ago, all hell broke loose

i started vomiting uncontrollably
not flu barfing but "my kind" of barfing;
that seizure kind of barfing
violent retching
and
exhaustive heaving
it got so bad and i got so weak that all i could do was lie there and barf on the floor
i could not be touched
i could not be moved

graham was in the bathroom with me, making phone calls to DR H's cell and trying to make arrangements for someone to come and take care of avery and i kept barfing and crying and then that crazy, jacked-up, over-caffeinated feeling i've been living with for the past 4 weeks unleashed as a full on blown out panic and anxiety attack

i TOTALLY FREAKED OUT

my brain went into sensory overload
i started having flashbacks of all the other times i have been this sick
and
i also became consumed by the thought that if avery left the house, she would die. i was convinced of that.
it was horrific

hello, PTSD and herxing all rolled into one

so. uh. yeah.
i was a pretty big, hysterical, sobbing, barfing mess
and
i was in so much physical pain that i couldn't handle even the thought of being moved and so i lay on the bathroom floor for 3 hours before i managed to crawl the 6 feet to my bed

that is pretty much the condition i remained in for the following 5 days
in bed, locked away from the world, ear plugs in, sound a deafening and excruciating beast to endure, the simplest, most inconsequential type of noises;
like ice cubes in a glass,
pages turning in a book,
a bird chirping outside my window,
the rain,
whispering voices,
tiptoeing silence.
all of it sending shock waves of electric-like torrents of pins and needles rippling over my body, their reverberations echoing thru my head, triggering a kind of infantile startle reflex and pain, pain, pain
and panic and anxiety attacks coming in near non-stop swells, spiked fevers, swollen, tender lymph nodes, diarrhea, barfing, tremors,twitching, visual disturbances, and atypical partial seizures.

evidently, things have gotten a bit better over the past couple of days
ha ha
that just made me laugh
it's so extraordinary to write about losing my mind in one sentence and then so casually lead forth with such a casual, non-nonchalant, "evidently, things are better now."
i probably am truly mad
and
i'm still snickering
and
mad or not, i'm able to finally ramble on about all of this
and
string thoughts into cohesive sentences (at least, i think am)
altho' i've noticed i keep misspelling "diarrhea"
and
for all the talk about it, you'd think i wouldn't have to keep having to spell check it
go figure

so, for now, for today, for right this moment (and yes, finally i'm not blogging in past tense but this very present moment!) the intensity of my symptoms have finally let up. i still have diarrhea, fevers, tremors, twitches, arrhythmia, and for the most part, am residing in bed with ear plugs on, but if i don't move too much or sit up for too long, i actually feel okay. ha ha. it's been pretty awful and it isn't great but it is better than it was.

last week, when i was at my worst, i feared i had gone totally bonkers
i saw those news clips of charlie sheen's televised rants and all i thought is
"wow. charlie sheen is my brain personified."
and i'm not poking fun at him or whatever is going on with him. i just have felt that freaking crazy.

i have been more or less bed bound for the past 13 days now. the first 5 of which i couldn't have gotten out of bed even if my pants were on fire but after that - well, i have managed (with graham's help) to white knuckle it to a couple trauma therapy appointments.

am i really in any condition to go?
uh, no.

i'm not really "well enough" to go
but
i'm also not "well enough" to NOT go
you catch my drift?

and the thing is, it HELPS
hallelujah
at least it helps with the PTSD part of me
i am incredibly grateful for this God-given therapist and OEI therapy (more about that another day)
so long as it helps, i'll go
desperation has it's place
i'll do whatever it takes

we've spoken with DR H several times
and
earlier this week, both graham and i had a long chat with him
trying to make a plan of attack

DR H is pretty insistent that we somehow find or hire extra help
and
as far as my blown up brain goes?

the problem with that is two-fold:
one part active infection;one part toxic overload
both in the hypothalamus area of my brain. the hypothalamus is the brain's command central and regulates pretty much everything. obviously, having that area of the brain infected and toxic creates havoc through out the CNS and ANS and that is triggering atypical seizures and is why i am one big jangled up mess of crazy neuro symptoms
blah
blah
blah
he explained it all
i retained only bits and pieces of his explanation

simply put, there is a war going on in the hypothalamus region of my brain
and
the active infection part HAS to be addressed but at the same time, hitting it too hard creates a toxic environment in my head
and
finding the delicate balance between the two is the fine line we are walking right now
as DR H put it,
we are treading in the no man's land of a war zone right now

for the time being,
he has started me on the IV abx rocephin and 200mg oral mino
and
we have increased the dosage of one of the anti-seizure meds i am on

i have to text an update of my condition to DR H every day
and
on monday, we will be heading down to seattle to see our doctor there
and
then we'll go from there

i don't know where that will be or what that will be
but
for now, i'll soldier on somewhere in the middle

THE BIG LONG RAMBLING RUN DOWN

it's been nearly a month since we flew down to SF to see DR H. i think it's high time i take a stab at giving a medical run down on where things have been, where they are at and where we go from here.

bottom line for me is that i am incredibly run down. if i were any more run down, i'd be under the ground. in the past 7 days, things have really gone sideways but i'll break that down another day. first things first, i need to back it up and give a run down on the past couple of months. and besides, i HATE posting stuff out of chronological order. i like order. about the only place right now that i can have order in my life is on this blog. i have to backtrack for the time being even if it confuses people. so bear with me. i started writing this while we were in SF and that was a month ago already.

so obviously to get things almost current (remember i'm not including the past week) this post is going to have to be a big, long, rambling run down. i actually wrote the bulk of it while we were in SF in mid february but then i had trouble posting it to my blog and i wanted to post pictures to break up the miles of text but they wouldn't load and then more crap happened and things got crazy. not that it ever stopped being crazy.

the last 4 months have been rough. i'm talking epic proportions type of rough. it's gone way beyond just the rigors of keeping up with the daily routine of dispensing meds for 3 people, reconstituting IV meds, infusing IVs - (parker is on IV roughly 3 -4 hours a day and i average about 2 -3 hours a day) - filling prescriptions, drug runs across the border, IV supply orders need to be made and picked up;

way beyond the weekly rounds of varying appointments with physiotherapist, psychologist, trauma therapist and doctors. way beyond the stress of trying to ensure parker somehow gets an education through this and trying to give avery opportunities to do "normal" stuff in the midst of this chaos and trying to not excessively worry about taylor, my on-the cusp-of-adulthood teenage son, whom has to cope with his illness and the delay it has caused in his plans for the 'rest of his life'.

it's way beyond the challenge of trying to parent and nurture and support and make the best out of a really awful situation. it's gone beyond "the regular run of the mill, chronic illness issues" that i (we) live with each day kind of ill. far beyond the standard, "i'm dragging myself thru the day feeling like death warmed over and the verge of hysterical collapse." yeah. i'm used to that. i've learned to function with that. i (we) can soldier on thru that.
it's beyond all that.
or maybe
it's the combination of all that
plus the constant onslaught of trauma produced by the crazy, unpredictable ways this disease manifests and that over the past 4 months, someone is ALWAYS acutely ill. even my "healthy" kid has been sick. repeatedly sick. and so have the boys. and so have i. maybe it's all of that that has ultimately culminated in running me face first into the ground.

i have spent a large part of the last 3 months acutely ill. the seizures i had at the end of october triggered barfing. of the last 127 days, i have barfed 87 days. the barfing is directly related to the infection in my brain and is not a "stomach" issue. i have no nausea and suprisngly i've not lost my appetite at all. actually it would be shocking if that ever happened... i love food way too much to not eat. barfing or not. i've just learned that some foods are not as palatable to "re-experience". ha ha
one of the worst?
tacos and chocolate cake
ok, gross.
too much information.

anyhow, my dysfunctional brain and it's associated misfiring is proving to be one heck of a force to reckon with. in december, DR H started me on a new IV abx. this seemed to help with the barfing. about 2 weeks after starting it, the barfing slowed down and petered out for about 14 days straight (a record). this was good - until i uncorked from the other end.
nice.

and so began the "if i'm not barfing, it's coming out the other end" or vice versa cycle. lovely. real lovely. the diarrhea was a major cause for concern too because being on abx puts me at risk of developing c-difficile. fortunately, my c-diff testing has been negative. actually, everything intestinal related in me checks out just "fine" - aside from the fact that i'm either barfing or exploding out the other end. ahem.

basically, the bottom (ha ha) line, is that the barfing and the diarrhea are brain related and NOT gut related. lucky me. obviously, all of that, has quite literally knocked the stuffing out of me and left me pretty vulnerable to opportunistic infections like the flu. and what the hek! this flu and viral stuff that is going around this year is rampant and virulent and it DOESN'T GO AWAY! since mid december, i'm (we're) stuck in this vicious, horrible, repetitive, exhausting cycle of
herx
flu
crisis
herx
crisis
flu
crisis
herx
week after week after loathsome week

and the barfing
my endless barfing
an increase in the barfing is the red flag warning that i'm heading into a herx now. and herxing is like heading into a twilight zone. swollen lymph nodes. anxiety and panic attacks. joint pain. blurred vision. dizziness. shortness of breath. low grade fevers. shaking chills. tremors. hypoglycemic episodes. intense noise sensitivities. arrhythmia. insomnia. brain fog. intense depression. that horrible internal pressure.
madness.
sheer madness.

and the minute the madness lets up and the intensity would recede, i'd come down with the flu. confused? i know - a lot of my symptoms sound like the flu - how do i tell the difference? i don't know how to explain it. it's just different. very very different. "lyme & co. sick" is so different from "regular sick" yet it is difficult to explain. in comparison, having the flu is a walk in the park. i know the flu is miserable. it IS awful. i'm not trying to minimize how terrible a nasty bout of the flu can be but lyme launches you into a whole other realm.

indescribable really.

i guess the bottom line (ha ha, i'm saying that a lot) is that the flu doesn't make you think, feel or act like you are crazy. the flu doesn't cause complete nervous system chaos. the flu is miserable and makes you feel like death warmed over but it doesn't leave you pre-occupied with thoughts of death for days on end.

the flu doesn't leave you begging and pleading with God to let you die.
lyme does that.

anyway, back to the herx/flu/crisis cycle.

the flu decended upon our house in december. we suspect it accompanied avery, our only "healthy" kid home from school. i came down with it, just as i was coming out of a herx. it took me a total of 3 weeks to get over it. by the end of january, my weight bottomed out and i was the lowest i have ever been since getting sick. and just so super run down. i was just starting to getting back some semblance of "my kind of normal functioning" when parker headed into a brutal herx
and then avery caught a cold
and then i went thru another herx
and then parker got the flu
and then taylor went thru a herx
and then i got a chest infection
and then parker went thru a herx
and then taylor ended up in the hospital
and
then i nearly had a heart attack (ok, not literally, but getting a call telling you that your kid is being rushed to the hospital via ambulance is ummm, really, super scary)

and then he (taylor) and we with him, spent 7 hours in the ER

and then 2 days later, graham went out of town on business
he was away for 4 days and that pretty much did me in. oh, i soldiered through it, trying to keep up but i was so brutally run down. and the chest cold that had been lingering around for weeks went straight to my head. i started running fevers of 104 again. my head felt like it would implode. my lymph nodes on my neck were epic in size and my ears started to hurt. really hurt. the day before we left for SF to see DR H, graham took me to a walk in clinic. turns out i now had a sinus infection plus double ear infection.
nice. i had to get on a plane and fly because we were leaving for SF the next morning
and
that is the condition i arrived at DR H's office in.

one look at me, in all my puffed up, swollen, run down, apathetic glory and DR H made it pretty clear that there is not a lot that we can do right now.
i am too run down
and
now i have finally arrived at the medical run down portion of this post and the outcome of our in office appointments with DR H (which were on Feb 15)

there are 3 distinct issues going on with me;

1. the viral/flu component - these stupid infections just keep re-circulating. and not just through our home, i think they're pretty much holding the entire northern hemisphere hostage.

2. the brain issues - lyme, bartonella, and babesia is entrenched deep in the hypothalamus region of my brain. it is unclear which infection or if all 3 are playing a role. DR H suspects that either bart or babs is causing the most havoc.

3. i have PTSD. post traumatic stress disorder. ( i have been seeing a trauma therapist for this since january)

what is not so clear is how much of each of these is impacting the overall picture. that is yet to be determined. there is much overlap with the symptoms associated with each. the fact, that i'm so run down really complicates the picture. DR H suggested that we move to BALI for a period of time so that i can get rest. that was not a joke. apparently, one can procure a housekeeper, nurse and accommodations for really cheap. but yeah, moving to BALI for 6 - 8 weeks, cheap or not, is not exactly ummm, feasible. so somehow we've got to find a way through this. i don't know. no idea.

in the meantime, DR H couldn't really change much in my current treatment protocol. we just have to slowly chip away at this beast in my brain.

we're targeting the viral component with some herbal/homeopathic remedies;
immunavira, biocidin, APV 20

i am having swelling issues again, so i am being re-started on daily injections of lymphomyosot.

i will continue on the IV abx, Zithromax and starting on the oral abx, minocycline. i will start on a low dose (100mg) and slowly ramp up to the full dose of 400mg. once i am up to full dose of mino and if my symptoms do not flare too badly, then i will start another abx called avelox.

i will continue to be on lamictal for the seizures. mestonin and gabapentin for CNS regulation. glutathione injections 3x a week for detox. zopiclone for insomnia. ativan for anxiety and panic attacks.

and naturally, there are multiple supportive supplements, minerals and vitamins - like chromium, moly-b, magnesium, fish oil, mundipur, etc. etc.

i will have a follow up phone appointment with DR H in 4 weeks.

anyhow, that's the run down on me. on to the boys.

parker is not out of the woods by a long shot but DR H was very pleased with his progress so far. and we are too. he's endured some pretty horrendous stuff - the psychiatric symptoms that manifested once we started his IV treatment were nothing short of horrific. unimaginable. but those symptoms have dramatically lessened in severity and his last really huge psychiatric episode was on december 20.

he continues to have bouts of what he has termed "loopiness" and is in tremendous pain but he is improving. slowly but surely. in january, he was able to get to school about 2-3 mornings a week for anywhere from 1 to 3 hours. unfortunately, he was not able to sustain that level of attendance and by end of january he was mostly home bound again. of course, the stupid flu bug circulating through our house played a role in that. (at least, that's what i hope)

of course, one step forward, 2 steps back. but really, his overall improvement in january was a very wonderful and significant sign of progress.

with parker, every day is different. hek, every HOUR is different. his symptoms flip from severe to mild nearly all day, every day. it's hard to explain. one minute he can be writhing on the ground in pain, or sitting on the couch, talking 'gibberish' or 'loopy' or 'zoned out' and the next minute he's out shooting hoops.

yes! shooting hoops. he continues to be in a tremendous amount of pain however, it is true, he is starting to be more and more free of his wheelchair. he also was able to be a part of his school's basketball team. he was even able to play a couple minutes of 2 games. that was super cool and very emotional. actually, considering parker was on 3 to 4 hours of IV everyday during that, it's remarkable that his body could manage that much activity.

so the game plan now is as follows:

he will continue to be on the oral anti parasitical called malarone for his babesia infection. he will continue to be on gabapentin for his CNS issues however over the past 1.5 months, we have been able to dramatically lower his dosage. that is a good thing.

DR H has him on quite a rigorous detox protocol. he will continue to have glutathione injections 3x a week. he is also taking alka seltzer gold (believe it or not!), renelix, itires, and mundipur. DR H is also adding in alkabase. of course, there are a few other minerals and vitamins too. oh yeah and the ursodiol which is a drug that helps to protect his gall bladder from the side effects of the IV abx, rocephin.

DR H is starting him on a drug called low dose naltrexone. it's been interesting to learn about this one. very interesting. a little weird. i'm too tired to explain it but here's a link if you are interested...LDN homepage

parker will continue on 2 different IV abx, rocephin and zithromax. plus additional IV fluids for detox. so he will still be on IV 3 to 4 hours a day. DR H is upping the dose of Rocephin. this hits the lyme bugs that are in the brain. DR H told us to expect an increase in parker's psychiatric symptoms again. THAT SUCKS - we're pretty worn out from our last go around with all of that.

taylor. taylor. taylor.
my strong, first born son.
my soldier son who suffers in silence.
and he does
and
i don't like it
and
i don't know how to write about it
it's weird

this has been a really tough haul for him. i cannot imagine being 18 and trying to deal with this. DR H said he couldn't have done it at this age. it's not just staying on top of taking pills or the rigors of treatment and symptoms flares and herxing that is tough. it's so much more than that.

it's being stuck at exactly the time in life when it's most obvious that everyone is moving forward. he'll be 19 this year and at a time when he should be out striving for his dreams, he's watching them fall to pieces.
and
as a mom, it is awful to watch your kid suffer. and struggle. and hurt. and it's happening at one of the most pivotal, confusing times in a parent/child relationship. it's hard. really, really hard. illness messes up the natural order of things. it often strips you of your independence. add to the mix, that this is happening during the exact time frame in his life where it is normal and healthy to actively seek autonomy and break away. well, even under normal circumstances, that process for both parent and child is difficult. painful. bumpy. uncharted territory.

taylor has tremendous faith and strength and he is a remarkable young man but he also has an 18 year old young man's brain. being a young man encompasses pushing the envelope, feeling invincible, burning the candle at both ends, pulling all nighters with friends playing (stupid) video games and eating copious amounts of total crap food all with relatively little impact to your overall health.
except
he is different
doing "normal" young guy stuff is going to have long term consequences for him.

truth be told, he is struggling to find balance or strive for balance...mainly with his sleeping and eating habits.
and DR H told him point blank, not getting and keeping those things in check, is downright detrimental and could be deadly.
and
that FREAKS me out
BIG TIME
and
i worry about this with taylor so much. and i feel like i haven't figured out a balance for myself in all this - how do i balance supporting him and yet kicking his butt into gear at the same time? i don't know. i hate that. i'll leave it at that and move on to the medical aspect of taylor's run down.

there has been improvement with taylor. at the beginning of every in office appointment with DR H, we have to fill out very, very long symptom check lists - it is an arduous task, especially with brain fog. however it really helps the patient and DR H gauge whether specific symptoms have improved, gotten worse or remained the same. taylor was pretty amazed at how many symptoms he could check off as "improved". that was encouraging for him to see and for us to hear about. sometimes, ok, most of the time, the improvement is so hard to 'see' because his life is so far from 'normal'. his progress was most notable this fall - in fact, by the end of november, he felt consistently well enough to start working part time. however, besides working a couple of shifts a week and spending time with his girlfriend, mara, he is able to do little else. some weeks are better than others. and there have been and continue to be many ups and downs. like that ambulance ride.

that happened the beginning of february. he was driving to work and all of a sudden got severe abdominal pain, dizziness and started to throw up. he tried to white knuckle it and drive himself to the hospital. thankfully, he was wise enough to realize his condition was not conducive to that type of bravado. he pulled over and called 911. later on we found out that on scene his blood sugar was elevated to 15. he was in very rough shape. there could have been tragic consequences had he not pulled over. pshhht. can't even think about that.

both graham and i were in an appointment with our trauma therapist as this was unfolding. i know, ironic, right? it's ok to laugh about that. we do. at least we had cleared some trauma and made room for the fresh trauma of getting a phone call saying our kid was on his way to hospital via ambulance.

we were a 40 minute drive from the hospital when we got the call. it was a long, stressful, upsetting drive. when we got there, taylor was in so much pain and so frail looking and so super extraordinarily pale. he was crying. and it was awful.

we spent the next 7 hours in the ER. once in hospital and on fluids his blood sugar returned to normal but he had sugar in his urine and elevated liver enzymes. he was sent for abdominal ultrasound which came back normal. the ER docs could not figure out what was wrong with him.

he did come round and the pain started to go away about 3 hours into the whole ordeal. that was a huge relief. as he started to feel better, you could actually physically see it. in fact, his girlfriend, mara, who had rushed to the hospital too, all of a sudden remarked,

"oh wow! look, you must be feeling better - you are brown again."

that was pretty hilarious and so true and it really helped to lighten the mood. in spite of the stress of the whole situation, we managed to make the best of it.

taylor was discharged from hospital without diagnosis except for the ER doc suggesting that maybe "it - whatever it was" had been caused by "one of those weird drugs" he's on for lyme disease. yeah. that comment was ridiculous and upsetting and not at all helpful. he's not on "weird drugs" - at that time, he was on 2 COMMONLY prescribed antibiotics. the docs attitude didn't come as a surprise to any of us but it was upsetting nonetheless. i am so tired of the hostile environment surrounding lyme.

anyhow, DR H doesn't really know what went wrong or caused all those crazy symptoms. he does suspect that it could have been 1 of 3 things;
1. a herx
2. a kidney stone
3. a gall stone

it may forever remain a mystery. so long as it doesn't happen again. but you know, who knows, we're at the point where all we do is cringe and think "what's next?"

at any rate, DR H was pleased with taylor's progress, but like us, very concerned about his sleep patterns. lyme really messes with your sleep. big time. the insomnia is brutal. however, not all of taylor's being up late at night is caused by lyme anymore. some of it is habit now. some of it is a coping mechanism. that balance thing again.

in order to help his body physically recalibrate, DR H is starting him on a low dose of hydrocortisone and an anti-depressant called remeron.

he will continue on the abx ceftin and start rifampin. then in 3 weeks, we will add in another abx called biaxin.

for system support, he will start avipaxin and continue with moly-b, magnesium, fish oil, quercetin and vitamins.

both the boys will have a follow up appointment with DR H in 6 weeks. additionally, DR H wants all of us to have an in office appointment with our doc in seattle, DR D. those have been scheduled for march 22. for now, we will work to implement the new treatment plans and then brace for whatever comes next and just soldier on.

that concludes my big, long rambling run down.