July 2017


This year, 2017, has been quite the year.  I turned forty this year.  I got my diagnosis this year.  This year has been one big reality check.

We spent the last couple of weeks going back and forth between Iowa and Minnesota, Mayo, my Lyme doctor, and a couple emergency room visits.  I had my PICC line placed for my Lyme treatment and ended up with early pneumonia and a blood clot.  I’ve also begun my IV Lyme meds.  I’m going to outline the plan, in case it’s relevant to someone else.

The diagnosis: I have an official diagnosis from U of Iowa Neurology and Mayo Rochester of Primary Lateral Sclerosis which falls under Motor Neuron Disease.  Three (THREE!) EMGs have ruled out denervation on my right calf despite the appearance of slight atrophy.  Atrophy (the muscle breaking down and denervation beginning) would signal a change in my diagnosis from PLS to ALS (amyotrophic lateral sclerosis.) It is known that if Lyme spirochetes invade the brain and central nervous system that many of the symptoms between PLS/ALS and Lyme are the same.  The question in my case?  Did Lyme cause Motor Neuron Disease?  There is no good answer to this.  All of my PCR serology tests come back negative.  This is not unusual.  Even Mayo states that serology is not a reliable test for Lyme, especially in the central nervous system.  I *do* show a small quantity of Lyme antibodies in my cerebrospinal fluid.  However, it is not a sufficient quantity to consider the test positive.

Considering this and considering that I had a (medically confirmed) deer tick bite in 2008 that was not sufficiently treated, we are going forward with Lyme treatment.  Both of my neurologists (Iowa and Mayo) confirm, in my shoes, they also would pursue Lyme treatment.

My Lyme plan looks very different than many other people.  Folks with MND who want to pursue Lyme treatment may want to study the photographs of Dr. Alan McDonald, a retired pathologist, who has done much to record nematodes in the brain of dementia patients.  It is believed that the tick not only confers Lyme (or co-infections) but also nematodes.   I have been taking Albenzadole – 2 tablets twice per day for a week, followed by a week off, now 5 days on, then a week off, then 5 days on, etc., to complete four cycles to kill the nematodes throughout their life cycles.

My PICC line has been placed and I have begun Rocephin (ceftriaxone), azithromycin, and Daptomycin – daily for six weeks.  The daptomycin is a cyst buster.  The azithromycin is a replacement for doxycycline.  There are some studies out there that show MND patients hasten their course with doxy.  We will also be treating suspected co-infections (Babesia and Bartonella.)

I accept that this may not work.  My Lord and God has chosen to allow this into my life.  He who could have prevented this has chosen to allow it.  Surely, if my Lord is good, and I am certain that He is, then He can work all things for good.  I do not doubt this.  I have seen times in my life where a moment did not seem good, did not feel good, but it worked good in me and in my life, and later I was grateful the Lord allowed it.

If this is you, right now, whatever you are facing, I would suggest you listen to this message.  It is moving and it discusses a biblical perspective when your dreams die.

https://ncbc.church/online-message/605

It is an interesting world that we live in… This world that sends mothers a message that is sounds something like this:
“Mother, your little child is good and perfect just the way he is.  If you would accept his natural state of being then you will find that he will naturally lean towards good things and love what is good.”

I wish that this were true.  Mother, I will tell you something else entirely.

Your beautiful child, made in the very image of his creator, is a gift from our Heavenly Father.  He is bright, intelligent, joyful.  He is also fully human, and, as such, capable of hate, selfishness, vanity, and self indulgence.

Children are not just part of the natural world, but also born of man with a very human nature.  I delight in my children.  They give me much joy.  I find they are intrisically creative and their intelligence astounds me.  I think we do children an incredible disservice when we patronize them and treat them as something less because of their youth.  Do not indulge a child’s human nature.

“Train up a child in the way he should go,
And when he is old he will not depart from it.”

 

The world would tell you, Christian mama, that teaching and training your child is one side of a coin.  Joy in your child is an altogether different side.  No! It *is* one and the same to train a child in goodness and find joy in the delight of raising them.

gator

We were waiting to see the alligator at the library yesterday!

It is an interesting thing to be diagnosed with a disease that you well know could shorten your life span and keep you from raising your children to adulthood.

I have been officially diagnosed with Motor Neuron Disease, probably Primary Lateral Sclerosis, from the University of Iowa.  I was seen at Mayo in Rochester last week.  They are still running tests but they also concur with the diagnosis for the time being.  Approximately 9 in 10 PLS patients will eventually develop ALS – Amyotrophic Lateral Sclerosi, a.k.a., Lou Gehrig’s disease.  That disease has a mortality of 100%.

And so the single thought I’ve had running through my mind for months is: How do I equip my children for life past childhood?

There’s that word again: equip.  It’s one the Lord has laid on my heart – not as a heavy burden, not something to be anxious over, but as one assigns a duty to be done, a goal to work towards earnestly and with passion.

It seems a little thing to indulge a child’s weakness until you can clearly see the bigger picture.  I am grateful for the clarity of purpose, to love, to teach, to find joy in and with these little ones for as long as I am given.

It is an amazing thing, watching your child mother.

OliviaGarth

This is our daughter Olivia holding our new grandson – aunt and nephew.
I am loving this new stage of my life, watching my adult daughter be a mama, love on our grandson, and dream of future grandchildren.

It makes me think of my own grandmother often.  She played an important part in my life.  She was Chief Encourager.  While grandparents must, by necessity, sometimes be the disciplinarian, their greatest gift to their grandchildren is that of encouragement.  Mommies and daddies are very busy doing day to day things.  Grandparents can focus on smiling at them, loving them, praying for them, enjoying them.

I’ve often said that everyone needs someone to be their biggest fan.  I have a child who has special struggles.  My own dad is that child’s biggest fan and that child blossoms under his care and instruction.  Truly, generations participating in the care, love, and instruction of a child is becoming a rare thing.  Our generation can do so much to impact the babies being born to our own children.  Never neglect that duty.