A marker of insanity

Look closely at this picture:

sheep, chair, hoof, trimming, animal, vet, husbandry, parasite, treatment

Did you know that you can purchase a heavy duty chair for a sheep?  Crazy stuff!  I cracked up when I saw it in the midst of researching online sources for parasite treatments.  This chair is for trimming the hooves of sheep.  I THINK I NEED ONE TOO!!!

“A sheep or a heavy duty chair?” you ask.  Who knows, maybe both!  Because that is just how insane things have gotten over here, trying to diagnose and treat a serious illness without a clear path to follow.  The latest example is trying to treat for parasites.  They harbor metals and toxins so it makes sense that my treatment would be so complicated, especially when markers for metals and toxins have been high for me at some point.  But try and define which parasite you have after numerous tests are inconclusive, you end up going down a dark hole of guessing or worse yet relying on alternative energy testing — neither one of which are appealing to me.

But I have seen parasites over here.  The worms you can see; the microscopic protozoa you cannot.  Over the past few months I have been treating them with a variety of herbals or limited doses of medications.  Some symptoms got better and my worst symptoms got worse for a day or two.  So what is it:  protozoans or worms?  Both?  Where would I have picked them up anyways?  Why have I gotten temporary relief with some symptoms and violent convulsive episodes and headaches with others?  The answers don’t come easily yet it appears that it is because I am on the right track after all.  Inflammation and brain swelling follows die off of parasites if they are in your brain, your central nervous system.  Many helminths can cause seizures.  Fortunately/unfortunately, brain scans have not found any cysts.  The only remaining diagnostic tools are more obscure labs or a lumbar puncture to test my cerebral spinal fluid.  I had spinal injections many years ago.  I don’t want a lumbar puncture!

So here’s how insane things have gotten lately:

  • If my Doctor’s office cannot find the right labs to process additional parasite testing then I am responsible to search for them nationwide and provide the office with all of the information, facilitate the referrals, and obtain the test procedures.  By the way, experience tells me that very likely I will have to follow up on getting the results to the Doctor’s office, confirming receipt as well figuring out how to fit reviewing them into my appointments already limited by cancellations 25% of the time by their office.  New appointments are 5 months from now . . .
  • The trial-n-error of a variety of herbal, over-the-counter, and drug options for treating parasites has left me having to manage virtually every aspect of this potential cause of illness.  Research continues to dominate my waking hours, trying to find the best review articles and treatment strategies for those that may apply to my care.  Thankfully my Doctor, after much resistance and lectures on his liability  concerns, will review this literature and make recommendations in light of it.  The newest step in me having to find appropriate laboratories seems too much to bear.  I guess I have no choice but to proceed and hope I find the right information online somewhere, Lord willing.  More time and dozens of more seizure attacks will follow daily in the interim.  At least Ibuprofen is helping now with the headaches!
  • The billing of two of three past treatment situations are my “special project” each week.  Looks like I just got the first one resolved from an ambulance trip in January so hey, let’s add two more, eh?  Getting pre-auth for a special injection and getting reimbursement for a specialized test in July remain.  No problem.  This is why we go through so many reams of paper around here dontcha know?  Printing out the documentation for tracking everything, following up, yada, yada, yada fills my days.  Just doin’ my job, ma’am!
  • My latest dilemma is the most crazy:  if I am convinced that parasite treatments are needed but I am unable to obtain the strongest ones via a traditional medical route then others in my situation have ordered medications from veterinary or international sources.  Ordering meds online scares the heck out of me!  Members of certain Facebook groups claim both are very safe options and have worked well for them when their Doctors poo-pooed their requests for treatment.  I just dunno about this . . .Systemic parasitic infections are often a clinical diagnosis just like chronic Lyme.  The latter seems to be more acceptable in illness-focused groups than the former.  But the evidence is growing (pun intended!) that one of the strategies opportunistic infections use to stay alive inside of you is to hide in larger parasitic organisms.  The body may even harbor parasites to keep these smaller organisms from killing us.  And the research confirms that parasites harbor toxic metals in possibly yet another symbiotic, protective mechanism. At some point you have to address both the chicken-and-the-egg in these toxic relationships.  Kill the parasites and out comes other toxins both organic and inorganic.  Talk about a “herx!”  At least now I have an Ultra Binder to minimize the herxheimer reaction.
  • Very simply, the only rescue remedy I have remaining to stop the worst of the convulsive episodes is a high dose of steroids.  Nothing else helps for more than a few minutes.  The problem with this is that my Doctor won’t prescribe but a few doses because of osteoporosis (that likely came from antibiotic treatment for chronic Lyme last year).  I understand his thinking.  However, he doubted me when I told him that I only used it sparingly even though I showed him the bottle with remaining doses still in the bottle!  He decided that it would be appropriate to use steroids when the convulsive episodes exceed 7 hours.  SEVEN HOURS!  That was what I did a week ago Saturday.  It was hell!  If I did not have those remaining few pills left, I would have landed in the Emergency Room again.  Holy cow.  Holy sheep?  What an insane treatment plan.
  • So I continue to stay up very late at night most nights because sometimes it lessens the convulsive episodes.  Often there are breakthrough spikes while I sit here with you and while my beloved sleeps soundly just beyond the door without me . . .

What an insane treatment plan indeed.  So gather ’round anyone lost in the sea of forgotten medical mania and serve up a tincture of sheep elixir for a sorry night of seizing under the moon.   Or maybe not.  I have no idea at this point.  But I gotta tell ya that wrapping up in a nice wool blanket on a bark-a-lounger sounds pretty good right now.  Move over Sheepy.  This gal’s gonna need to rest more than you do right now . . .

JJsheep, flower, bug-eyed, big eyes, lamb

 

 

Treatment Update: The Beasts Within

If you follow as many of the various functional medicine forums as I do, you probably have noticed the topic of parasites coming up more often these days.  In fact, there is a free “Parasite Summit” coming up in September.  This topic became a personal one for me within the past month.  Allow me to explain.

A friend and her sister were receiving some complex treatments for serious health issues that they have been battling most of their lives.  Shortly after their focus turned to testing and treatment remedies from outside the United States, my friend suggested I look into parasites as the potential cause of the seizure attacks I have been battling for over 5 years.  I looked into it.  Their provider would not be for me yet the topic launched me into some new research about the time my hubby and I were set to leave on an extended vacation.  Imagine realizing during your first day away from home that you have a new infection that requires attention IMMEDIATELY!  Yeah, well when your bum itches making you crazy insane, ya gotta fix it FAST!

So right before heading out to my River Bear’s kayaking nationals 2 States away, wifey-poo requests hubby-poo stop at a local drug store for an over-the-counter medication.  Thank the Lord he said yes!  My symptoms diminished within hours!  The problem was not a yeast infection but a nasty pinworm/parasite infestation!  How did I get it?  Who knows?!  Pinworms are highly contagious and you can pick them up almost anywhere.  The big shocker was that the seizure attacks virtually disappeared for the next 24 hours after treatment!  I wasn’t expecting that!  No episodes falling asleep or waking up; barely a little tic-zip broke through here or there.  What was going on?

Three weeks have now passed and I have repeated the OTC remedy a couple of times.  I found that clove essential oil with coconut oil provides some topical relief with the added benefit of killing the parasite eggs.  Who knew?  And now my Functional Medicine Doc is testing me a couple of different ways with a couple of different lab tests to see if we can capture all the critters that may be wreaking havoc “down there,” in my body, and brain.  Yes:  in my brain.  Parasites can move to any tissue in the body once they hit the bloodstream or lymphatic system.  My MRI and CT scans have been negative for typical markers that would suggest Central Nervous System involvement, however, allergies to contrast dyes have prevented use of same in diagnosis.  In the end it really doesn’t matter to me if tests show anything or not.  The idea of parasites just makes sense to me.

Simply stated, parasites develop a symbiotic relationship with their human “host.”  They can actually help the body by balancing blood sugars or harboring heavy metals/toxic chemicals (that would be toxic if left to circulate freely).  Parasites are not a good thingy though.  They can also harbor infectious elements (some have suggested Lyme disease bacteria) setting up resistance to treatment, to eradicating the infections.  And I thought it was the cysts and biofilms that were the biggest issues in treatment resistance!  As they continue to live in our bodies, they drain nutrition and mineral resources in addition to creating a host of negative symptoms that mimic a wide range of diseases.  Gut dysbiosis is a big example to which I can relate:  my Doc wonders if parasites are causing my belly pain which has not changed much after two different treatment protocols for Small Intestinal Bacterial Overgrowth.  He says that worms/flukes/bugs can favor the right lower quadrant and where the trouble lies for me.

But the Palo Alto Toxoplasmosis Serology Lab testing was negative.  Pinworms don’t typically cause neurological problems.  Stool testing hasn’t found anything in the past even when I put a WORM in the sample cup!  Oy vey!  Maybe these two new tests will yield something useful?  In the meantime, I am taking lots of anti-parasitic herbal formulas with a concoction of binders with gratitude that neither trigger seizure episodes as they have in the past.  Lord willing, I am going to get well!  Indeed there are parts of days where I feel some positive changes for the better as a result of these additions to my care.

If you have followed this blog for awhile then you know I am always looking for answers, for hope.  I do hope to get well and am working every day towards that goal.  Overriding everything however is this guiding principle:  that my true hope is in my Lord and Savior Jesus Christ who will one day make me whole, here with you or when we meet in heaven.  Nothing will change that.  He is gracious and good to me even on my worst of days.  I am so humbled to feel His presence on my bed of sickness as well as the moments where I can have a little fun here and there.  Speaking of fun, did I tell you about white water rafting 2 weeks ago?  Yeah, you heard me!

Stay tuned Gentle Reader.  Pictures and more stories to follow that will blow your socks off . . . or at least get them a little cold and wet!  The Snake River is about 60 degrees even in August dontcha know!  More on that one next time.  Gotta take some stuff and get to bed.

Take care, JJ

white water rafting, Snake River, white water, rapids, Class II, Class III, raft,trip, Mad River, living, in the moment, one day at a time, break, chronic illness, fun

Snake River, Jackson Hole, Wyoming

 

Vampire Diaries 1

The slew runneth through my veins

Three times per week, no less

Mixed with this concoction, drug, or natural element

Sigh . . . I hardly get a break ya know.

Mr. Herx visits more often now

Not a friend nor enemy per se

He just stays and goes to torment at will

Hi torn and tattered calling card left with me.

The blood letting continues in test tubes of hope

For finding the answer, the cause:

Is it toxo, tuli, or tricho in cahoots with Lyme

Or a known co-conspirator that eludes capture?

Maybe in another lifetime or appointment next month

Will I find more to Google in this Hide-n-Go-Seek

Followed by a witches brew so dastardly I seize

Within seconds of pounding it down in faith perhaps displaced.

Aye, is not therein the rub or the salve to quiet my soul?

My Lord sees it all and stands nearby knowing the time,

The place, the reason, the meaning, the end

And will show me what I need to know and when

It says so in His Word:  better written than a vampire diary ever could.

So reject that a proclaimed healer bearing a wooden cross

Will know more than the Spirit of assurance in which I rest

Who will answer these questions, not you nor I.

My vessel may not go on or somehow come into its needed repair

But my being shall live on as it should in Christ

With a testimony, Lord willing, to bring glory to Him Who made it so.

Yes, therein I shall rest.  He holds my tears filling the river of life

And turns beauty from ashes in the dawn of the coming day

For “hope beyond’ as this blog will continue to attest.  Come along with me Gentle Reader.

The day of His return and our restoration is coming soon.  There is hope!  JJ

 

Psalm 41.3

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,