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,

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

When the healing comes

Sure has been a wild ride of late.  Here’s a treatment update.

After almost 4 months of treatment, I have improved 28 points on the Multiple Systemic Infectious Disease Syndrome Questionnaire of Lyme Literate Medical Doctor (LLMD), Dr. Richard Horowitz!  Thank you Jesus.

Lord willing, later this week I will transition from IV infusions of antibiotics from an outpatient clinic to home health care.  Our insurance company denied treatment beyond 28 days, leaving us with a massive bill if my secondary insurance will not cover ongoing treatment.  Since it will take several weeks to find out the verdict, we cannot keep paying $900 per treatment, 3 times per week while we wait!  Hiring nurses (from a home health care agency and one in private practice) on a private pay basis plus ordering supplies and medications online will reduce the price to around $300 per visit.  Planning this transition has required considerable time, stress, attention to endless details, and work!  The orders are in process with many steps to follow in the next 2 1/2 days.  A LOT HAS HAPPENED IN THE PAST 5 DAYS to make this happen.  Thank you, Lord, that my brain has come back online just in time.  Whew!

I just found out that DNA testing from Fry Labs shows that I do have the FL 1953 protomyxzoa rheumatica (a fungal infection) that can be found in 50% of patients with chronic illness.  This parasite survives in the body in the impervious gel-like biofilms that also make Lyme bacteria difficult to eradicate.  My LLMD has recommended a combination antifungal (prescription) and biofilm-busting (nutraceutical) protocol that he says could render me very sick for a minimum of 4-5 weeks.  Most patients have tremendous recovery thereafter; gratefully I am hoping that the binding agents I have discovered will be an effective adjunct to this treatment plan and reduce the die-off or “herx” reactions.  Steve and I are prayerfully considering how to proceed as we were hoping to visit family for an important event out-of-State in a few weeks now that I am “not as bad.”  Please pray too!  I am soooooo ready to start living again!

Working with a brilliant naturopathic physician via Skype to review my epigenetic data, lab tests to date and medical/treatment history has finally led to some nutraceuticals that I can actually tolerate.  Soon I hope to add specifically formulated IV and injectable nutritionals to the home infusions (instead of driving to a clinic we were considering far from home twice per month).  And the excitability of my central nervous system is starting to come down at last:  generally fewer and shorter convulsive episodes every day for the past 2 weeks.  This has not happened in the past 4 1/2 years until now!  PRAISE THE LORD!  Experimentation with an Iodine Loading Protocol has further enhanced my results.  I have to think that I am on the road to recovery at last . . .

Steve and I are encouraged, humbled, grateful, and watchful as the events of these past few weeks have unfolded.  I have been able to get out for a walk once per week and work in the gardens around our home some.  Some of the pain and headaches that I battle every day have improved; I don’t really complain when it’s related to digging in the dirt as the sun is going down . . . I feel blessed to have had the friendship and support of a couple of friends here for rides to-and-from the hospital for treatments lately too.  And we are starting to plan some of the activities again that we used to take for granted in the past:  think Steve’s kayak races, the Tin Can Ranch (travel trailer), and the pup in tow as well.

When the healing comes by Lisa Bevill

Enjoy this lovely song that reflects the hope that is becoming clearer for me.  I hope that if you are struggling, you will lean on the Lord, Jesus Christ to see you through and keep your eyes on the goal what ever that may be for you.  He knows and loves you, cares for the desires of your heart too, Gentle Reader.  There are sprinkles of His goodness all around us no matter what the circumstances.  Let not the first time we recognize this as only when the healing comes.  Let today, this moment be a reminder that the waiting, the “pressing on” as Lisa sings, is an important part of the journey too.  Praying for you this night.  JJ