Smaller Moments Mean More

When the mist on the pond lifts up to the air

The morning hath come and I give witness to life once again.

For I am up through the night, my old haunts hath returned

A way of coping, of living:  just what I gotta do for right now.

So I edit a magazine, make charts of treatments, plan for when I will be well,

Most folks would not notice the shifts ever so small

The wretched episodes continue albeit with shaking, less overall.

I had to gain courage to take more meds/more remedies than ever before

Go rogue to kill the monsters within with faith and every tool from this road.

“Parasites in the brain” sounds pretty scary might you agree?

Yet that is exactly where I have arrived so be that as it may

Find me spacey perchance to dream when restorative sleep comes that way.

The smaller treats of life mean more to me now in my softened state

I get to see them in slow motion and savior their texture, their smell even when awful like glue.

What is before me fills every moment in much more detail

Healing comes small before big so intentionally I walk through most of the day.

Don’t get me wrong, the chores fill more hours than they used to years ago

That ‘s just one part of the plan so is rest and in times of rest I believe answers we have found.

Wyoming, clouds, blog, metaphor, analogy, Chistian, faith, majesty, creation, God, sky, big

One does feel ever so small next to God’s majesty revealed in the big sky over Wyoming . . .

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

 

But I do this instead

I really need to write but I surf instead.

The taxes need work yet sit in a box behind me.

The stack of files from last year call to me for updating.

The bathrooms still need cleaning the rest of the way, not just the bowls and floors.

Alas, I better sign off.  The first task is now done.

I am now on a roll, I guess . . .

It’s Legal: CBD Oil is Here to Stay

A couple of years ago, I ordered my first bottle of CBD oil from Bluebird Botanicals.  My hope is that it would take away the seizure attacks that I experienced on a daily basis as part of a serious and complex illness.  The preliminary research showed that CBD oil made from industrial hemp would be legal for me to purchase in Indiana, was effective for intractable seizure disorders affecting children, and would bear few if any side effects.

I tried it.  I slowly increased my dose over the next 3 weeks to the level indicated in the testimonies and research that I had found online.  Then things went terribly wrong.  I started to have frightful nightmares.  They increased in vividness and horror then were joined by waking night terrors.  These are the kind that don’t stop when you wake up!  I was scared to continue.  I backed down my dose, took a break, re-started and nothing seemed to bring relief.  The benefits of halting or preventing seizure attacks did not outweigh these horrible side effects.  Eventually I abandoned CBD oil altogether.

While medical marijuana has Cannabidiol (CBD) as an ingredient, you don’t need to live in a State where medical marijuana is legal to obtain CBD oil by itself.  Medical marijuana also contains THC which is a schedule 1 controlled substance in the United States.  CBD oil from industrial hemp only contains .3% THC.  This allows sale of pure CBD oil in all 50 States.  For me the .3% was still too much.  I would later understand that I don’t even have a genetic disposition in my opiate receptors to explain my hypersensitivity to THC.  Heck, I smoked pot occasionally as a young adult without any ill effects.  There would simply be no explanation for my intolerance of legal CBD oil from industrial hemp.

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Flash forward 3 years.  I became acquainted with a company who manufactured pharmaceutical grade liposomal products.  When they introduced a CBD oil product made from industrial hemp, I decided to try it again.  I still suffered from daily convulsive episodes although the number of hours lost per day to them had decreased after beginning IV antibiotics for chronic Lyme disease.  Seizures, tics of organic origin, non-epileptic seizures (or whatever you want to call them) were a definite neurological complication of latent Lyme disease.  The episodes were less per day but not gone.  I ordered a bottle.

I did not get past a single dose of the new product before suffering another waking night terror incident.  Dang!  The only difference this time was that the superior liposomal nanoparticle size delivered the CBD more quickly to my brain than the Bluebird Botanicals product — and for me that was not good.  I returned the bottle to the healthcare professional from whom I had ordered it.  And then I waited.  There would be no other compelling rescue remedies to reduce my suffering when the nightly episodes came.  No doctor would order medication for me to even try; I have been to the Emergency Room 10 times over these past 4 1/2 years because of wretched convulsions!  Even over-the-counter Benedryl would leave me unable to function very well the next day if it did stop them (and render me too sleepy to care about anything the next day).  A few herbal antibacterial supplements offered temporary relief on occasion and the reason for that will be another blog post about Small Intestinal Bacterial Overgrowth (SIBO).  Neurotransmitters and hormones that can give rise to seizures are manufactured in the gut dontcha know . . .

I learned that one of the better manufacturers of CBD oil was preparing to introduce a THC-free CBD oil so I contacted the owner.  I leveraged everything and asked to try a beta version of their new product.  Within 2 weeks the bottle arrived in the mail.  It took around 15 drops to get a significant response:  their THC-free CBD oil definitely helped reduce the intensity and duration of the nightly seizure attacks.  Yeah God!  This benefit happened even when herxing (or reacting) to a new antibiotic used in the treatment of SIBO.  Some relief came at last!  I am optimistic for the benefits that I might receive when the first round of antibiotics for the treatment of SIBO are completed in 5 more days.  Perhaps healing my gut will help everything as well.  In the meantime I have contacted the owner again to see if I might obtain additional product; my hope is to transition from using it as a rescue remedy to having enough for regular dosing that can help prevent the episodes altogether.  I may need to switch brands to get this accomplished.  We’ll see.

CBD oil is legal for purchase in all 50 States of the USA.  If you are frustrated with noxious symptoms especially tics, seizures, pain, depression, or anxiety, there may be hope in the use of CBD oil from industrial hemp.  Please do significant research on the track record of the manufacturer, look for independent lab testing of purity/potentency/concentration of active ingredients and absence of unnecessary fillers before making your purchase, especially if online.  Very likely you will not find a superior product at your local health food store as hemp seeds and hemp oil contain too low a concentration of CBD to make much difference for a serious health condition.  Here is one brand that is available only from healthcare practitioners nation-wide:  Colorado Hemp Oil.  And this website has some good general information although note that it used to be funded by a manufacturer of industrial hemp products:  Project CBD.  I am not sure of its current status.

This is my story and I’m sticking to it!  I am not an expert by any means just a gal trying to find some relief in an ethical, legal, and medically sound manner.  Feel free to share pertinent information below.  Please don’t try to sell me anything!

Take care, JJ