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 and Anniversary

Six years ago tonight began a journey that has tested me in every way possible; brought me closer to my Lord and Savior, Jesus Christ, than ever before; deepened my love and gratitude for my beloved Steve; and helped me to grasp the incredible resilience of the human body/human spirit.  Thank you Lord for your sustaining grace through it all!

Rather than go into the details, I will simply refer you, Gentle Reader, to my story here.  Briefly, I got deathly sick with viral hepatitis after kayaking in a local reservoir and never fully recovered.  Seizure attack episodes began on a daily basis within a couple of months and have yet to resolve.  This serious illness has had many names, required extensive treatments at considerable expense, and rendered me unable to work in my profession of occupational therapy.  I miss working.  The social isolation, sense of loss, grief, and various disabilities have changed my daily life considerably.  Without my faith in Christ I would not have made it this far.  I do have hope for a better tomorrow which brings me to my quarterly treatment update as follows:

Recent lab tests found extremely high pesticide toxicity.  I immediately increased Far Infrared Sauna and various detox treatments until I could meet with my functional medicine Doctor.  Now after two intense weeks of exhausting research, medical appointments, and enough follow-up that would make the great T.V. detective Colombo proud, I am hoping that my Doctor’s office has processed a referral to a State Toxicology Center.  I found a neurologist that specializes in seizures related to toxicity and I want to see her as soon as possible!

In the meantime, I try to function as best as I can.  Sadly the very difficult titration of a new medication either keeps me up most nights or wakes me up with breakthrough tic attacks every two hours.  (I still spend most weekends in and out of bed with sickness.)  The focus now is to inhibit acetylcholine that we hypothesize is causing the seizures because of damage from organophosphate poisoning (OP).  Acute treatments for OP are well known but not for long term effects; we simply do not know how long I have had this toxicity.  The medication is an interim measure.  I am wondering if various Lyme, fungal, viral, and even parasitic infections have sequestered OP like these organisms can do with other toxic agents.  We know that detoxification can increase feelings of sickness called “herxing” (from release and recirculation of mycotoxins for example) when we either detox too fast or our liver or kidney pathways are blocked.  I now use bitter herbs with various binding agents in a “push-catch” protocol that helps to better tolerate the process.

organophosphate poisoning, round-up, pesticide, herbicide, toxicity, toxic, clonidine, seizures, treatment,acute

So here we go again with another new treatment direction!  At least this time I have concrete lab values to help explain what is going on along with a new, promising treatment direction.  In the meantime I’ll be hanging out as the “chick in the box” (as Steve says) at about 124 or more degrees, trying to literally “sweat it out” in our sauna. There will be no anniversary celebration per se for enduring six years of hell albeit with some sweet moments sprinkled in here and there.  There will be humility though as I try to be a godly steward of this journey my Lord has entrusted to my care.  I do have hope for a better tomorrow.  That is where this blog began 6 months into this 6-year journey and I hope that is where I will remain beyond that too.

Thank you for sharing the road with me Gentle Reader.  When I see my stats ticker go up a notch my spirit gets a little lighter, knowing you are there.  Thank you.

With love,  JJjer, 29:11, jeremiah, hope, future, plans, says the Lord, Christian

Vampire Diaries 3

“It’s only a day away,”

The curly haired girl would sing on stage

‘Cause the sun did come out “tomorrow”

And that was all that shined over here, alas.

Bedbound once again

I search my mind in wonder:

What penance doth I need to serve?

What sin doeth I need forgiveness?

Thy husband is off on his adventures

And I am here, alone with you

Exasperating in another lost day

Where even the counselor had little to say.

My Lord is silent on such an occasion

Perhaps waiting for me to simply dwell

And know that He is there

Even when I cannot see, feel, or touch His face.

Is this my fate, I ask to the silence around me?

Perhaps it is.  Perhaps nothing will ever change.

I am to rejoice the Scriptures tell me forthright

That must come from grace for my strength fails,

Lest a key drops into my space with some goodness

This day I will simply breathe one nare at a time

(Until the pounding in my head subsides, alas.)

Psalm, psalm 139, 9-10, dwell, peace, Scripture, Christian, strength, darkness

 

 

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

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.