December 9, 2009

HE IS NOT SHAKEN

today was our appointment with DR H. we were at his office for 4 hours. our appointments with him ran more than 2 hours. it was a long and exhausting day.


parker posing in DR H's infamous chair

the outcome?

obviously, DR H should no better than to leave us in his office unattended.


and the diagnosis?
definitely not a viral infection
definitely a bacterial/parasitical infection

most likely parker has lyme and babesia
DR H will begin treating him with doxy and zithromax
. DR H said the doxy should help to alleviate some of his joint inflammation and pain.
treatment will take 9 to 15 months or longer
but
kids with lyme can be cured!

however
before rendering a definitive diagnosis of lyme, DR H is testing him for several other bacterial infections that could also be the cause his symptoms. they are chlamydophilia pneumoniae, klebsiella pneumoniae, streptolysin, and mycoplasma fermentis/pneumoniae/hominus. we are hoping that we will be able to have all of these tests done in canada (which would mean they'd be covered by our medical.)

DR H has also ordered a blood test for babesia and an Lyme dot-blot antigen assay (LDA). the LDA is a specialized test for lyme. it is different than the lyme blood test that he had done in october. that one tested the blood for antibodies. the LDA will test for DNA evidence of the actual lyme spirochete. it is a urine capture test that is done over a 7 day period. during 5 of those days, parker will be aggressively treated with 3 different meds in order to try and provoke his body into making an immune response. this test, along with the babesia test, need to be done through a specialty lab down here in SF. they are not covered by our medical or insurance.

so, no
definitive diagnosis of yet...ack! i know!...and more test results to wait for!

we are grateful that DR H is looking at the whole picture. he is thorough, unbelievably knowledgeable and totally 'microbe savvy'. one of the things we have often appreciated about him is that he is never quick to blame all symptoms on lyme and/or coinfections. ( my hairballs are a most recent example! i blamed babesia and he said no. he was right - and he was right about my navel ring too-- which, btw, he repeatedly rubbed in my face today!)
at the same time, this process is
frustrating and difficult and we wonder why, why, why must a conclusive answer remain elusive.

the past 3 and half years have been tough, tough, tough. the pain and the stress of the past couple of months have felt surreal and have been nearly unbearable. it has left our family shaken to our core.
we are all struggling to cope with my continued fight and process parker's illness. some days all of it comes crashing down on us and emotional chaos reigns over our home. my greatest fear is that this roller coaster we ride will rattle my kid's faith. that all the anger, pain and confusion they are feeling will be focused AT God rather than given and trusted to Him. that would be the greatest tragedy in all of this...far beyond the pain and suffering we have endured thus far on this journey...and far beyond this 'kinda, sorta, maybe' diagnosis we now face.

this fear has weighed heavily on me over the past couple weeks. i am so thankful that God, in his grace and mercy, gave me a verse to hold on to.

2Thus says the Lord, Who made you and formed you from the womb,
Who will help you: Fear not,
3For I will pour water upon him who is thirsty, and floods upon the dry ground. I will pour My Spirit upon your offspring, and My blessing upon your descendants.A)">(A)
4And they shall spring up among the grass like willows or poplars by the watercourses.

5One will say, I am the Lord's;
and another will call himself by the name of Jacob;
and another will write [even brand or tattoo] (yes it really says that!) upon his hand, I am the Lord's, and surname himself by the [honorable] name of Israel.

~ isaiah 44:2-5 (AMP)


God is faithful. He is right here beside us. and we won't let go because He is not shaken by what is happening to us.

allow us to share with you the song "You are not shaken" along with some snapshots of our journey with lyme thus far...



video

1 comment:

Renee said...

Shannon
So often what you write here touches me and gives me strength to keep moving forward. I will not share today's "earthquake" that has occurred, but the song and the word of God found in Isaiah and Proverbs have been like a warm blanket wrapped around my fearful mind today.
My prayers are with you all as you continue on this long difficult journey.