February 14, 2010

BABY STEPS


yesterday morning we witnessed a sight we have not seen in many months

parker WALKING

graham and i were sitting in our downstairs office when parker walked into the room
walked
walked
walked
it is a good thing we were sitting

we have not seen parker vertical for an extended length of time since hallowe'en
we almost didn't recognize him!
it was the strangest, sweetest, most wonderful site to behold

akin to the excitement, the shock, that hold your breath til you burst feeling experienced when your little one takes that first tentative, shaky baby step

wow
living in the unpredictable land of lyme never fails to surprise me!
to see this staggering improvement so quickly into treatment is miraculous

recovery from lyme is a marathon,
a fight, a battle, a war
where the journey between diagnosis and recovery is a roller coaster trip through a hell called "herxing"

HERXING 101

simply put, herxing is a really horrible sign that you are actually getting better. it means that the antibiotics (abx) are annihilating the bacteria.
once the lyme and other infection(s) begin to be killed off by the abx they release neurotoxins and create a toxic load in the body. all of these toxins circulating through the blood stream wreak havoc on the body. this toxic load causes an exacerbation or flare of all your symptoms...and add insult to injury, one can often experience new symptoms and/or a recurrence of old symptoms.

the length of the herx depends on how high a load of bacteria is killed off and how effectively and efficiently the body eliminates the toxins. generally speaking, once the body has recovered from a herx and cleared the resulting toxins, one will experience a decrease in their ongoing symptoms and progress is made because some of the bacterial load has been eliminated.


note that i said "some" of the bacteria is eliminated.

this is not an infection that can be killed off in one fell swoop. because of the nature of this beastly bacteria and its life cycle, treatment with the appropriate abx means multiple rounds in the herxing ring. treatment and the road to recovery from lyme is a long, slow slog that at times can feel like you are only killing one of millions of beastly bacteria one minuscule, incremental step at a time.

(you can read more about herxing in the blue side panel on my blog - which is to your right)

since returning from seattle and starting on the appropriate abx and dosages to fight his infections, parker has battled through his first herx. it has been indescribable. his suffering, which was already so horrible, got worse...on top of an intensifying of his symptoms, he also developed peripheral neuropathies (nerve pain). it has been rough so we were certainly not anticipating seeing any evidence of improvement so soon.

we are greatly encouraged by these baby steps!
none of his symptoms are gone and he is still in pain and his tremors continue
but they have been beat back an inch

fighting lyme takes endurance
it is not a race
it is a slow long haul of a marathon where the road to recovery is often described as
one step forward, two steps back
but
this weekend,
parker took his first baby steps on that long road to recovery
and
he is blazing a trail, making up for lost time


yesterday he felt well enough to go to his buddy's house for the afternoon
tonight he went to another friend's house for a sleepover
and
i have spent the evening anxiously sitting by the phone...

nervous
like a mama experiencing her little lamb leaving the fold for the first time


wondering
how he is doing

worried
that a sudden flare will bring him home

scared
that he is overdoing it and will pay for it

but
understanding that ability to do can be fleeting with this disease
and
progress may recede when another round of herxing hits

and so
this weekend, we've thrown caution to the wind
and
have just let him roll with it...
ROLL? forget that!
we'll let him walk it...and enjoy this pit stop on the road to recovery.



5 comments:

Joanne said...

Wonderful news and one in the eye for his oh so sceptical non lyme literate doctors.
Thank you for your blog it must help encourage many other people with children suffering from Lyme Disease.

I do hope Parker's next herx is not so bad and he can move from strength to strength and his cocktail of medicines work well for him.

Kristie said...

Hey Hun,

As I cried in rejoicing today when I read your blog, I could only begin to imagine what you must feel. I am thrilled to hear of Parker's progress but can connect to the anxiety that you described. Praying that there are no steps back for the two of you.

Luv ya,
Kristie

Renee said...

This is wonderful news! I am so happy for Parker..what you wrote gives me hope too for Joel and I. he is off all meds right now due to his body no longer tolerating the high doses...he will go back on in a month but for now is on fluconozole only. I am on Cumanda only (my choice) as the 3 yrs on abx caused estrogen suppression and now I need a D&C which is not fun for somone with MCS. I have been wanting to give up this process as it is causing other things to go wrong...but just reading what you wrote gives me courage to not give up...just maybe take a different road for a while.
Bless you for sharing your journies. They are of help to the rest of us.
God bless

Kara said...

Catching up with my blog reading ... oh, I'm all teary-eyed reading this wonderful, fabulous, miraculous news! So exciting!! Such a blessing. It is great he has enough energy to get out again and enjoy life a bit. Praying he will continue to make good progress after each round of treatment. Hugs, Kara

Nonerz said...

so glad to hear this!!!