A Letter to my Docs

Today I landed on some new ideas that we pray may be of use for my recovery from this serious illness.  I’ll let you read it for yourself.  Lord willing, I will get well soon!  Take care Gentle Readers and Godspeed.  I am praying for you too this day.  With love, JJ

Seizure attacks kept me up all night last night and my sleep cycle is now upside down again.  I had to stop the Buck Shot (i.e. nutritional injection) due to numbness in my right hip that has yet to resolve; ruling out this week if there is any possibility that it is the Thyroidea.  I have not slept since yesterday.
The “Holy Cow” moment came as follows.  Lying in bed unable to sleep I realized that my dog eats Canadian goose poop on occasion.  I researched parasites/infections from goose poop and only toxoplasmosis seemed to be an infection that I could have gotten from her.  Sometimes my stool smells like hers!
 
Looking into this further I found the following article about latent toxoplasmosis in humans:
 
 
Of interest were the remarks about hepatitis in acute toxoplasmosis infection (yes, October 11, 2011 this illness began with viral hepatitis after contaminated reservoir water exposure) and the effect the parasite can have on a variety of brain cells including astrocytes and neurons.  In a study involving 17 countries, cryptogenic (no known cause) epilepsy is 4.8 times more prevalent among toxoplasma seropositive persons.  “There are evidences that t. gondii infection has the greatest impacts on the hippocampus and amygdala.  And get this:
“Another likely hypothesis which t. gondii could cause neurodegenerative and psychiatric disorders, is modulation of different neurotranmitters especially dopamine in brain by the parasite (reference).  The t. gondii genome is known to contain 22 aromatic amino acid hydroxylases that potentially could directly affect dopamine and/or serotoinin biosynthesis.”
Are not phenylalanine, tryptophan, and tyrosine AAAs?  (My naturopath has prescribed phenylalanine to help with dopamine trafficking!)
“Treatment with a dopamine reuptake inhibitor (GBR 12909) alters the behavior of the mice infected with t. gondii (reference).”  [Sounds like my HC7 treatment plan . . .]
“Furthermore, t. gondii has two genes encoding tyrosine hydroxylase which that produces L-DOPA (reference).”
“Likewise, inflammatory responses are the innate defense against t. gondii infection (reference)  [Got plenty of inflammation; this statement refers to psych disorders.]
AND NOW FOR A REFERENCE TO AUTOIMMUNE DISORDERS:  “There is evidence that t. gondii infected astrocytes and microglial cells release of IL-1a, IL-6, and granulocyte/macrophage colony stimulating factor (GM-CSF).  On the other hand, IL-6 may mediate the exacerbation of autoimmune disorders in the CNS; in addition, there is strong association between IL-6 and neurotransmitter production (ref).  Furthermore, in vitro stimulation of neurons to secrete dopamine and probably other catecholamines by IL-6 were also reported (ref).”  [Multiple brands of GABA made me worse.  I was recently diagnosed with an autoimmune disorder.]
RELATED TO MY STATEMENT ON FACEBOOK (to my naturopath) THAT 5-HTP MADE SEIZURES WORSE:  “On the other hand tryptophan is an essential amino acid for t. gondii replication (ref).”
Kynurenic Acid (KYNA) was 12.5 on my last Nutreval (normal is below 7.1)  “Astrocytes play a pivotal role in the production of KYNA in the CNS, because astrocytes are the main source of KYNA (ref).  Likewise, astrocytes are one of the most important cells that invade by t. gondii . . .”  [Holy cow.]
JUST WHEN IT COULD NOT GET ANY CLEARER, READ THIS FROM ANOTHER SOURCE AS NOTED BELOW:
“The genome of the protozoan parasite Toxoplasma gondii was found to contain two genes encoding tyrosine hydroxylase; that produces l-DOPA. The encoded enzymes metabolize phenylalanine as well as tyrosine with substrate preference for tyrosine. Thus the enzymes catabolize phenylalanine to tyrosine and tyrosine to l-DOPA.”
 
Alrighty then, time to get me tested for toxoplasmosis right away!  My dog eats goose crap.  Not sure if it’s worth it to get her tested or not so I’ll ask the vet today.
Please advise how to proceed.  Every night and morning, my life is hell.  (Signed JJ)
UPDATE:  Our dog was negative in an office screening of her poop for parasites.  Still in hot pursuit to rule out this infection due to exposures mentioned above.  Stay tuned peeps!  JJ
12 step, promises, experience, benefit others, AAACOA, ACOA, Al Anon, Adult Child,

Little blue booties ring true

The little reminders that things are going to be o.k., that the Lord is in charge, and that you have all you need are quite an encouragement to me today.  I am seeing this more clearly as my head clears after a whirlwind “Plan B” long weekend.

We never made it to Branson, Missouri for the celebration of my Other Mom’s (aka mother-in-law’s) 80th birthday celebration.  Family was scheduled to land there from 4 States for a long weekend including the 4th of July.  My Other Dad (aka father-in-law) had an acute worsening of multiple joint pain and was unable to drive the two of them cross-country from California to Missouri so we made the decision to do what was best:  cancel and reschedule the trip for the Fall.  We all scrambled to cancel various reservations made for camping, cabins, the Dixie Stampede show, watering of the garden in our absence, etc.  Then this wifey-poo decided she still needed to get away . . .

Meanwhile, my life continues to be dominated by the treatment of chronic Lyme disease, a serious fungal co-infection (protomyxzoa rheumatica), and the complicated detox/supplement regimes that go with it.  While I am grateful for a solid treatment plan, the making of our home into a hospital plus the tangible reminders at home of thousands of hellish convulsive episodes begs for a change of scenery when possible.  Sure looked like the enormous effort to get away was going to be worth a bit ‘o respite from all of those reminders.  I reacted selfishly when everything changed.  I was more crushed for my own sorry lot than my mother-in-laws cancelled family gathering, big birthday celebration.  Maybe I need less of “poor me baby,” sentiment, eh?

Steve and I thought through our options.  We had cancelled supporting a paddling race in a town about 100 miles away since we were going to be gone so we re-volunteered to help out and bring our Stellar kayak display.  But travelling a total of 200 miles plus standing out in the hot sun all day recording race times and hosting Steve’s booth seemed a bit much after 3 straight days of IV antibiotics.  So what about camping afterwards?  In the end we worked into the wee hours of the morning the night before the race to make Plan B a reality!

  • Supporting the race.
  • Finishing up all shopping plus cooking within a day for my special diet.
  • Making new reservations to camp in 2 places over a holiday weekend beginning north of the race and en-route to a new destination.
  • Continue north to Silver Lake Dunes and the campground adjacent to a Christian camp where a young couple we know has worked for about 7 years.
  • Return home after the 4th of July for Steve to return to work, allowing him to finish some important training and projects that we would have missed had we gone to Branson.
  • Resume treatment at home after a 5-day break.
  • Commence about 8 loads of laundry, post-camping melee, etc. too!

So with a tremendous effort, the ebb-n-flow of violent reactive episodes that followed being off of my treatment schedule, and some sweet memories sprinkled therein we had a decent weekend overall.  At some level I exclaim:  how crazy!  And: Is it worth it?  Well my answer this time is different than in the past:  NO!  There still are too many noxious exposures from campfires in any campground to succeed at avoidance even inside a modest travel trailer.  There is always some type of breakdown that ends up stressing us out, creating conflict even nearly 5 years down the road from dealing with this serious illness.  When we got back I was ready to sell the travel trailer the Lord had provided the resources for almost 3 years ago.  What were we thinking back then anyways?  Trying to continue with a normal life was my focus then when I did not have a clear treatment plan.  Killing the beasts within me at an extraordinary cost is my focus now.  The proceeds from the sale could pay off some of our debt.  I was ready to let it go should the Lord be leading me to do so.

In a Christian marriage, the husband is the God-ordained spiritual leader of the home.  His headship is God’s design for the protection and provision of his wife and family as he follows the leading of the Lord.  I have come to trust this, be blessed as well in submitting to Steve.  As it turns out in the scenario I have shared here, Steve suggested that we wait to make a decision about the trailer until later this year.  We have a couple more trips planned and it is clear that he wants me with him on all of them.  How sweet!  His love is amazing.  We will make some further adjustments in how we handle things next time and hope that I will be doing better as my treatment progresses; going with a partial treatment holiday could work out better for travelling than dropping everything, Lord willing!

Oh did I mention the blue footies yet?  I bought a large box of disposable medical shoe coverings in anticipation of developing a new product this past Spring.  (I could earn some money to pay for the development of my real invention by my company, Two Step Solutions, Inc.)  Attaching a Swiffer-style duster with Velcro to the bottom of a disposable slipper makes a great foot-broom for dusting wood floors.  This saves a lot of time and effort as compared to other cleaning methods, IMHO!  Then when I continued to have difficulty functioning, the idea got shelved instead of developed.  Dang!  Flash forward 2 months later and those cute booties are part of the garments I ask my home health nurse to wear to avoid chemical/dust exposures when administering my IV antibiotics three times per week.  Works great!  And in thinking through all of this today I am reminded of these truths:

John 16:33 New International Version (NIV)

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Matthew 6:25-27 New International Version (NIV)

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life?

My Heavenly Father and Husband is so good to me.  He loves me so and I get to feel it everyday in the arms of my beloved Stevers.  The Lord is there in times of wretchedness, times of joy . . . none of it will be wasted as He leads me home to dwell in the heavenly mansion of many rooms, near the river of Life, with the saints who have gone before me sheltered in His majesty beyond imagination.  Thank you Lord that you sprinkle some of that goodness into my days to encourage me, to encourage my beloved.  Thank you for caring about all the details of our lives.  I submit them to You.  We will wait upon the Lord, Jesus Christ, until You walk us home to sit at Your feet in awe and wonder of all that has gone before us:  from blue booties to a lighthouse along the shore.

This rings true above all else:  You are so good to me.  Thank you Lord.

Dunes Harbor, Sleeping Bear Dunes, lighthouse, just julie writes, Julie Horney
Kayaking at Lighthouse Beach along Silver Lake Dunes

 

 

 

Spacey but upright

There’s no pretending when the story gets bizarre.  I mean who could make this stuff up?

As the grace of the Lord has blessed, I am not bedridden thus far in the ramp up of treatment for a serious protozoal infection.  Just headaches, increased convulsive episodes at night or morning, achiness, and fits-n-starts of my ability to function.  While this is certainly awful, I was sick like this every day for the middle years of these 4.5 years of illness so I am kind of familiar with it.  This time we can call it a “herxheimer” (die-off) reaction and temporary!  I am thinking that I have benefitted from a pretty comprehensive protocol that has finally come together:

  • Ongoing IV Rocephin and fluids via home infusions 3x per week for the treatment of chronic Lyme disease, per my Lyme Literate Medical Doctor (LLMD).
  • Weekly injections of a compounded B-vitamin and prescribed nutritional suspension.
  • Weekly injections of a bio-homeopathic treatment for a newly diagnosed autoimmune disease (to start in 2 days).
  • Additional IV fluids now pending to combat dehydration and the effects of the anti-fungal protocol.
  • Supplements to improve calcium trafficking as prescribed by my naturopath and genetic coach.
  • Pharmaceutical grade supplements including an iodine protocol.
  • A switch from filtered water to non-fluoridated, purified bottled water.
  • Anti-fungal and biofilm busting treatment of protomyxzoa rheumatica (formerly known as FL 1953).
  • Continued mold/sugar/sweetener/dairy/gluten-free, low oxalate and glutamate diet.
  • Mineral baths and celtic sea salt supplementation.
  • Detoxification via far-infrared sauna, nutritional binding compounds, and periodic colon hydrotherapy.
  • A fabulous support system.
  • Rest.  Gardening when possible.  Rest.

Unfortunately the bills are piling up as Steve and I go along.  At some point we will need to decide how comprehensive of a plan is really needed long term due to the significant expense when insurance covers virtually nothing.  For now all I can say is that I continue to move in a direction of recovery and we will figure out the rest as the Lord leads.  Our prayers, your prayers are being answered.  Thank you for praying.  Praise the Lord!

 

Thank you Jesus for the hope we have in you and that I can see in my life.  And please bless my faithful husband, Steve!  Lord willing, I am going to get well!  :JJ

Psalm 20:7 (NIV)

Some trust in chariots and some in horses,
    but we trust in the name of the Lord our God.

Anticipation

One could say that the days before a cross-country trip are usually filled with a multitude of tasks and anticipation of the good times to come.  I’ll give a “yes” to both accounts and now we are back from coastal Alabama with pictures to share.

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Paddling the Stellar S16S felt good in Perdido Bay off Alabama/Florida waters
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Steve and I congratulated Elizabeth and her husband Daniel as she earned her wings to become an Army Blackhawk helicopter pilot

 

 

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Our happy travelling companion Elle
helicopter, flight, pilot, family day, Army, ride, flight, school
Elizabeth piloted a helicopter ride for each of us after graduation. Awesome!

I did a lot better travelling this past week than our last trip in November of 2015, that is for sure.  I was able to attend all but one planned activity by pacing myself, meticulous planning, and some improvement in my overall health.  The convulsive episodes that still accompany the serious illness I am battling kept themselves largely to the overnight hours and travelling in my truck.  And they were much less!  Yeah God!  It’s amazing how much life can fit in between the setbacks these days . . .

Now that 11 loads of laundry are done, the travel trailer and vehicles are cleaned, and even some garden chores completed I am ready.  A nasty new treatment begins later this week.  Resuming the infusions of IV antibiotics, a few scheduled appointments, grocery shopping, and making sure our support systems are in place come first before the darkness falls.  It really could be that bad.  Or maybe not?

They say that breaking up stealth biofilm and killing protomyxzoa rheumatica (formerly known as FL1953) can render a person useless.  Or bedridden.  Or really, really sick.  Then after around 4 weeks, there can be miraculous improvement.  My trial run 2 weeks ago of 1 capsule of the anti-fungal brought dizziness, light-headedness, and cognitive slowing.  My Lyme Literate Medical Doctor was thrilled when I told him.  (He is kind of kooky that way!)  “It’s affecting your brain!  That is good!” he exclaimed in a way that only a master diagnostician can.  Oh boy.  “I wonder what the full dosing will be like?” was all I could think about.  And how will I eat?  Get to the bathroom?  Keep up with all of the treatments while home alone when Steve is at work?  So many questions remain unanswered at this point.

This is what I know for sure.  In a way, the break in treatment for a week of vacation came too soon.  I was not ready to go without the IV antibiotics and daily routine that has facilitated this turnaround without some extra struggle.  There was a lot of stress amidst the good times.  In another way, the break fed my soul!  I got to see what living was like for everyone else while being with everyone else.  I got to kayak with my beloved River Bear . . . . TWICE!  I did more than one thing each day and did alright trying to do so.  When we got back home I got to work in our garden two days in a row.  Wow, Lord.  Then I read an adventure novel in 2 days!  How lovely it was to immerse myself in a bit of life again.

So for the unknown treatment coming in a few days I will say this:  bring it.  I have faced worse than lumbrokinase and prescription Lamisil.  I will go slow if I can and employ every herxheimer (aka die off) remedy I have in my arsenal if needed.  The Lord has brought me through near-death experiences, daily hell on earth, despair beyond belief.  I have been given a taste of life again to encourage me and those around me as well.  It is time to dig a little deeper, literally.  We have found The Beast in the recesses of my brain tissue.  This is war.  Lord willing, I am going to get well.

If we don’t chat for awhile, please pray for me and Steve, k?  Thanks a bunch Gentle Reader.  I am grateful for you.  With love, JJ

Julie BH Crop