October 13, 2009


so now that i've duly butchered several fairy tales and pretty much beat the whole theme to death, i shall crash land back on planet earth...

the real version of events isn't nearly as interesting when not read as romanticized prose.
the short of it is this:
i had my in office appointment with DR H this weekend...actually he kinda came to me. He was speaking at a conference on Lyme in Seattle (which is about a 2.5 hour drive from our home). super doc that he is he agreed to see me in Seattle and spare me the expense of travelling out to SF to see him. really, i'm not that special - he did this for all his canadian patients (or those that could get there to see him) from what i heard he was booked solid from 8am-5pm for 2 days straight.

we are very grateful for this. we're pretty tapped out financially, so it was a huge blessing to be able to see DR H so close to home. and now given what is going on back home in regards to Parker being so ill, well, you can imagine how relieved we were to not be far away from home nor gone for as long as we are when we fly out to SF.

this in office visit/trip also nicely coincided with our 11 year wedding anniversary. as is tradition we went out for a nice romantic dinner...with Peter.
dinner with Peter? yes.
tradition? no. not yet anyway.
but who knows? after all, he picked up the tab!

and who is Peter? Peter is one of the first 'lyme' friends we made. we met him at the first support group meeting we went to. along the way, he has become a very good friend...and our travel buddy. he is also a patient of DR Hs. Graham, Peter and I have now made several trips together to SF to see DR H.

Peter and i have had a long running burrito bet. each time one of us has our monthly phone appointment with DR H we place bets in regards to how behind schedule he will be. for example, if your phone appointment is scheduled for 9:15am it is not way off to bet that he'll be calling around 11:00am then. whoever bets closest to the actual time he calls, wins. the loser has to buy the winner a burrito.
i happen to have an uncanny synchronicity with the clock that DR H runs by.
so yes, Peter is a stellar guy to pay for our anniversary dinner of burritos.
he owed me 2!

as for my how my appointment went...well, i'm not as far as long as i had hoped or thought i was. i think i thought (for the first time) that maybe we would hear that i was well enough to be done with the IV part of my treatment...rather what we learned is that i am actually not well enough to re-start IV treatment. according to DR H i have earned the distinction of being one of the worst herxers he's ever treated. lovely. just the lofty goal i was aspiring to achieve. not!

there have been some herxing exceptions but generally speaking my shortest herx lasted 16 days and my longest lasted 3 months. herxes render me completely disabled - both physically and mentally. my body has just never handled the toxic load that herxing produces. this is nothing we didn't already know. DR H thinks that he has identified part of the reason why my herx reactions are so extreme. some blood work i've had done has shown that my body is running very low on a certain enzyme (Alkaline Phosphatase) this enzyme is made by the liver and assists the body at cellular level to remove and neutralize toxins. we've been working at trying to raise that number for the past 4 weeks. it has not raised at all. DR H has made some adjustments to my current protocol and we are hoping and praying that these will help raise that number...this is critical and crucial - until we are able to raise that number, DR H cannot aggressively treat me.

so where things stand now. my body has 6-8 weeks to start producing AP! if it does not raise with the new therapies DR H has prescribed than i will have no other choice but to move forward with the blood specialist (DR LM in nevada) that DR H referred me to several months back. we are hoping to avoid this as the expense for this is horrendous. please pray for my AP numbers to raise.

other than that there were 2 other areas of major concern:

babesia infection

i have been on alinia and a micro dose of malarone (oral meds) for my babesia infection for the past month. i did briefly herx at the 72 hour mark of starting these 2 meds. 2 weeks ago, i began to experience what i knew was the start of one of my major herx reactions. i immediately pulled off of my meds for 7 days. as stated above, my track record with herxing is horrendous and given everything that we are dealing with at home, i just didn't feel like we could afford to have me rendered incapicitated for an indefinate time frame. at the time, i knew i was playing with fire, but i felt like i made the right decision for my family. DR H disagrees. i will not get well if i do this. in fact, i could make myself even sicker. needless to say, i earned the bad patient award for that shenanigan. of course, DR H understands our situation at home and that keeping me functional is needed but he nearly had a cow. i had to promise and commit to remaining on treatment now.

in one weeks time, i will be adding in an additional micro dose of malarone and switching out my alinia for tinidazole. i've never been on tinidazole before so that should be interesting.
please pray for us as we brace for what feels like the inevitable. no time is ever a good or ideal time to herx...but right now, with parker so ill, the thought of me being unable to function, even in the limited capacity i do now, will take a tremendous toll on all of us.

lymphedema -

my lymphedema issues continue to be a major problem. despite our best efforts and all sorts of therapy, i continue to 'puff up' constantly. the primary concern right now is the swelling in my abdomen. it has been getting progressively worse over the past 3 months. fluid filled sacs in my subcutaneous tissues can now be felt. they feel like water balloons. they 'slosh' around like ping pong balls when palpitated. at this point the exact cause is unknown...but there are theories (remember the movie "alien") just kidding.

DR H has prescribed an injectible medication to try and deal with my weirdly abnormal lymph condition. i'll have to give myself subcutaneous injections 3x/week. he also suggested that i remove my navel ring from my jelly belly...i've had that piercing for 16 or so years so it seems a bit of a stretch that it could be contributing to my lymphyness. DR H admitted it is somewhat of a long shot but he did yak on something about naturopaths and body/metal connection...i can't quite remember exactly what he said as my mind was still reeling from the trauma of hearing i have to start injecting myself...but i will do as he says and remove my navel ring for 3 weeks to see if that makes any difference - but not before i find me some fishing line to preserve my piercing!

that's pretty much the gist of things. or what i can remember right now.
oh yeah. we found out my kidneys are in pretty rough shape. i've named them fred and ted. please pray for fred and ted.

one last thing
i took my green goo with me to my appointment...with the intention of giving DR H a taste of his own medicine. ha ha. i daringly plunked it down on the desk in front of him. he looked at it. he looked at me. he jotted something down in his in legible scrawl. he paused, the he thoughtfully gazed out the window, tapped his pen on the side of his head. he turned back to me with his game face on and said in a vaguely threatening sort of way,
"you know, Shannon, i know this doctor who actually chews and vomits up goo for his patients..."

i'm pretty happy with my manufactured green goo now.

1 comment:

Renee said...

You doctor has quite a sense of humor...cracked me up with the chew your goo option! We are keeping you in prayer and your sweet family too....