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

 

 

As you consider Holy Yoga: Part 1

Holy Yoga, pose, woman, mat, Christian, blog, evaluate, discernment

As an occupational therapist trained in therapeutic exercise and as someone who taught aerobic exercise in clinical settings years ago, I have always watched the trending in the health and fitness industry.  I recently explored various fitness certification opportunities as part of my continuing education requirements as an OT, including those oriented toward low impact dance and yoga.  ROM Dance  was part of my repertoire years ago when working in mental health settings.  Match these interests with keeping a close eye on the alternative health industry that came on the heels of the New Age movement of the 1990s.  Early on I decided to match all of these observations against the available clinical research and especially the truth of Biblical scripture as guiding lights.

So is there a back-story?  Yes, there’s more!  I am seeking a gentle, supportive movement  practice, ideally consistent with my Christian faith, to aid in my recovery from serious illness.  The trauma of this serious illness has left me with several medical complications, deconditioning, weakness, physical limitations, and an altered body awareness that I believe can get better.  I had been exploring and pursuing some possibilities in the world of dance, exercise, massage, and traditional occupational and physical therapies when along came Holy Yoga:  a “community of believers on mission to bring the Gospel to the ends of the earth through the modality of yoga.”

In a few blog posts, I will explore Holy Yoga and come to a personal decision about whether or not I will pursue it at this time.  I started my research at the Holy Yoga website then jumped right into some challenging viewpoints but not from the Christian or even medical communities.  Instead I listened to a lengthy YouTube video of Hindu philosopher, Rajiv Malhotra’s, interview of Holy Yoga Founder Brook Boon.  Talk about what the political world calls “opposition research!”  Below is the feedback I posted after viewing the interview.  My next steps will be to research the response of the Christian community and probably attend a class locally.

Here’s Part 1.  Stay tuned for Part 2!

Nice job Brooke Boon!  I might clarify to Mr. Malhotra that Jesus is God, the Holy Spirit is God, the Father is God:  the God of the Bible and NOT a manifestation of God.  Each person of the Trinity is one God, 3 persons.  Liken this to the fact that I am one human being but a wife, sister, and daughter or 3 person-alities.  Not an exact analogy but it can help understand that the one true God is a clear, Biblical distinction from the plethora of Hindu gods that are dead, powerless manifestations of their “god.”  But more on that theology is a discussion for another time.

Further, I really wish Mr. Malhotra would have had the decency to give Ms. Boon his interview questions beforehand, especially if he intended to debate the nuances of Hinduism and Islam in contrast to Christianity.  He said the interview was to be a “dialogue” however his theological questioning and word choices indicated otherwise.  His agenda to discredit Holy Yoga was polite yet clear.  For example, he said at the end of the video that Hindus must “be aware” and essentially wake up to what Christians were doing with Holy Yoga; he also claimed that Holy Yoga’s purpose was to evangelize.  Seems like evangelism may come with the Foundation’s outreach to victims of sex trafficking but wasn’t this an interview about the story, benefits and beliefs of Holy Yoga classes not the Foundation?  Might want to differentiate the two sir.

It was important for me as a born-again believer in Jesus Christ who is exploring Holy Yoga, to view this interview.  I saw clearly how someone who is not a Christian cannot fully understand the tenants of the Christian faith from, for example, literal translations of scripture.  These literal interpretations weaken Mr. Malhotra’s subtle challenges, arguments, and warnings about Holy Yoga.  Specifically, his references to “the law” were not about Roman law as he claimed but God’s law given to Moses (as documented in the God-inspired Old Testament) to help guide the nation of Israel.  The Mosaic law helped define right and wrong to a lost people, lost society, and provide guidance as to how to live.  It also instructed them on how to relate to God and atone for sins or wrongdoing.  This law was later replaced with the death and resurrection of Jesus Christ, indwelling of the Holy Spirit, and New Testament teachings from Christ and His disciples.  Persons of various “religious affiliations” or “denominations” outside of Christianity seem to like to focus on “the law” concept instead of Christ’s concept of grace because they are used to the structure and constraints of rituals . . . as if it is the rituals themselves that make them somehow right or wrong:  better people or worse yet, right before their definition of God.  And their definition does not match that of the single God of the whole Bible.  Christians who are born-again believers are free to express themselves with various traditions, cultural garb, etc. (and even try on the dressings of others) but never look to them for salvation.  Cultural traditions/trappings have no inherent power.  Only faith in Jesus Christ alone can save:  bring us eternally into a right relationship with The One True God and eternal life.  It’s simple really:

John 3:16 New International Version (NIV)

16 For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.

Of course we want to share our faith with others as our joy and calling as believers in Jesus Christ.  (Matthew 28:19-20).    Looks like a lot of fun to me, to find an established method of breathing an exercise while praising God!  Wish they didn’t use the Hindu words though, as it will be confusing to many who think that Holy Yoga is completely Bible-based.  There are gray areas for sure.  Holy Yoga borrows many traditions of Hinduism.  I hope that the classes clarify this for participants.  But is that enough to avoid it?  Or not find a way to enjoy its benefits?  Perhaps the earthly “gurus” of Hindu yoga could view the adaptation of the breathing and exercises of their yoga traditions as more of a compliment than a threat.  Such is the nature of humanity to not want their invention changed.  I am sure that the major drug companies don’t like competitors making generic copies of their drugs either!  But hey, children often imitate the characteristics of their parents and hopefully a lot of times this is a good thingy!  Imitation can be an expression of flattery, friendship, even love.

Because of the prevailing pull of the world on Jesus’ own disciples and their need to overcome it, Christ petitioned for divine intercession to keep his disciples “not of the world” by being sanctified through the word of God, which is truth (see John 17:16–17 below*).  Believers must guard our hearts in all pursuits with the truth of Scripture, spiritual armor (Ephesians 6), prayer, heeding the conviction/discernment of the Holy Spirit.  Mr. Malhotra quoted the apostle Paul extensively in his post-interview analysis.  Perhaps the apostle Paul just wanted to be friendly as he adopted some behaviors and garb of the people groups he was trying to reach out to with the hope found in Jesus Christ?  Surely we can understand this today.  Don’t we bring a gift a friend would like to his or her birthday party even if it is not our own favorite hobby, taste, brand, or preference?  Or let a co-worker listen to a CD of our music in hopes he or she will enjoy it and share it with others?  Let’s be clear, however, that the  lovely cultural trappings or activities that make life sweet are never equal to the incredible gift of salvation that comes from belief in Jesus Christ.

Please look beyond the rituals, the cultural trappings, the methods of exercise and breathing, the physical stuff of this world as you evaluate the practice of Holy Yoga.  Each believer in Jesus Christ must decide for him or herself, how to apply the real substance of the Bible (and of life for the believer) is the Word and the truth it professes to our daily lives.  Explore Holy Yoga with knowledgeable believers.  Pray about it.  Examine the world view of your particular instructor too.  And if everything checks out o.k., enjoy a really cool exercise/meditation class in the meantime.

JJ

*John 17:16-17 New International Version (NIV)

16 They are not of the world, even as I am not of it. 17 Sanctify them by the truth; your word is truth.

This but not that

woman with medication, supplements, too many, overdose, Lyme, chronic illness, naturopath, functional, medicine, supplements

Take the B Complex but not with Methyl B12 (met/met not val/val or met/val right?)

Twice per day not at breakfast and per your COMT SNP and not to excrete it by noon.

Add back the P5P because it’s not in my B Multiple as I once thought;

That was last year’s protocol and btw, change brands for the latter while you are at it too.

Again use folic acid already but not the one everyone else does

Lest you reject, binds or cancels out stuff with the rest, if you tolerate it of course.

What about that folate receptor antibody study from that lab

That your other Doctor told me about but did not do last year?  Duh, what?

And take the Sambuca all the time not just when battling a cold

Because it’s the only zinc I can tolerate but not with my newly found NAC dose.

Be sure to take the Claritin with manganese to fool the Lyme

Which I guess I have but only clinically and because my labs say this mineral is low.

Then there’s the magnesium I finally found that I could take or soak in through the skin

But take that one twice per day as well so it doesn’t go out with the B’s.

So if this makes any sense to you then you understand my plan better than me,

Because things are getting insane over here while still treating OP plus the P in the brain.

Oh yeah, the multi-factorial binder I took 2 hours after the new anti-parasitic

Must follow everything by 2 hours lest it cancel it out like a whiny kid who drops her stolen candy while running away.

Surely there’s more to know in this and not that:  just my brain dump for tonight

Can’t wait for my appointment next week when more test results will tweak this madness even further!

Stay tuned . . .

JJ

 

 

 

 

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

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 . . .