Saturday, July 25, 2015

A Family Affair

As I have steadily been improving in health, my sister Heidi has been struggling with a severe downturn in her health.  After years of being constantly tired and receiving a recent Celiac Disease diagnosis, she is experiencing symptoms very similar to my Lyme symptoms.  Heidi is bed-bound as a result, only able to use a walking frame for very short distances.  In addition to the muscle pain, severe fatigue and weakness, trouble with thought processing and mental exhaustion, she has been having seizures (a symptom I have thankfully been spared).  Heidi and her husband live in Australia.  After much testing and a week spent in hospital, all of the tests the doctors have administered have returned negative.  As a result they have suggested that Heidi is experiencing some psychological issues which have resulted in her body shutting down.  We do not accept this suggestion, as Heidi has always been energetic and full of life, constantly busy and what I have affectionately named a 'super mum'.  As her symptoms overlap mine in so many ways, we strongly suspect Heidi also has Lyme Disease.  She is the same age as I was when Lyme took over my body - 27.  She also has three young children.  Like Canada, Australia is not adept in recognizing, diagnosing or treating Lyme.  We are not sure at this point where Heidi will end up going to receive a diagnosis and treatment.  By the grace of God, she has an appointment scheduled in Melbourne (Heidi lives in Western Australia) with a doctor there who has Lyme himself.  We are hoping he will be able to help her.  Because of the severe weakness, fatigue and seizures, it will be very difficult for Heidi to manage the flight to Melbourne.  We ask that you keep Heidi and her family in your prayers.  We are thankful that, because of my journey with Lyme, we have recognized signs of the disease very early after the symptoms have made an appearance and are hopeful this will speed up the process until her treatment can begin.  Heidi has taken the Horowitz questionaire (link here:, and scored very high which strongly indicates Lyme as the source of her health struggles.

Heidi and her boys 

We have been trying to wrap our minds around how it is possible for two sisters to both have late stage Lyme disease.  I have lived in Canada for 14 years and assumed I contracted Lyme here.  Both Canada and Australia downplay the prevalence of Lyme in their countries.  If Heidi does indeed have Lyme, this will mean that we most likely contracted it as children, as we obviously both lived in the same area back then, and have memories of removing ticks from our bodies.  Lyme is able to lie dormant in our bodies for years at a time, causing non-specific symptoms that we tend to ignore, until a compromise to our immune system causes it to emerge and take over in full force.  A strong immune system is able to hold Lyme back so that those of us infected are able to be symptom free for many years.  It is well possible that this is what has happened with Heidi and I.

Because I was not aware of the Lyme infection within my body when I had children, it is quite possible that I have passed the infection on to my children (this will also be the same for Heidi).  We will have to monitor our children closely for symptoms and treat them as soon as possible, should they arise.  For now, our children appear healthy and strong, and keeping their immune systems strong is their best defense.

I would like to share with you a psalm that was very dear to me during the years when I was very sick.  It seems to put a voice to the inner struggles that we experience during times of intense trial, during the sleepless nights that we battle through, and directs our gaze upwards for hope and comfort:

Psalm 77

I cry out to God; yes, I shout.
    Oh, that God would listen to me!
When I was in deep trouble,
    I searched for the Lord.
All night long I prayed, with hands lifted toward heaven,
    but my soul was not comforted.
I think of God, and I moan,
    overwhelmed with longing for his help. Interlude

You don’t let me sleep.
    I am too distressed even to pray!
I think of the good old days,
    long since ended,
when my nights were filled with joyful songs.
    I search my soul and ponder the difference now.
Has the Lord rejected me forever?
    Will he never again be kind to me?
Is his unfailing love gone forever?
    Have his promises permanently failed?
Has God forgotten to be gracious?
    Has he slammed the door on his compassion? Interlude

And I said, “This is my fate;
    the Most High has turned his hand against me.”
But then I recall all you have done, O Lord;
    I remember your wonderful deeds of long ago.
They are constantly in my thoughts.
    I cannot stop thinking about your mighty works.

O God, your ways are holy.
    Is there any god as mighty as you?
You are the God of great wonders!
    You demonstrate your awesome power among the nations.
By your strong arm, you redeemed your people,
    the descendants of Jacob and Joseph. Interlude

When the Red Sea saw you, O God,
    its waters looked and trembled!
    The sea quaked to its very depths.
The clouds poured down rain;
    the thunder rumbled in the sky.
    Your arrows of lightning flashed.
Your thunder roared from the whirlwind;
    the lightning lit up the world!
    The earth trembled and shook.
Your road led through the sea,
    your pathway through the mighty waters—
    a pathway no one knew was there!
You led your people along that road like a flock of sheep,
    with Moses and Aaron as their shepherds.

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