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

So much to consider

Phil 1:12, Philippians, trials, suffering, endurance, Christian, crisis, long term, illness, chronic, humor, gallows12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.”  Phil 1:12

Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme:  we shall rejoice with Christ as our guide!  Yeah, I know that is a stretch . . . but we do know that the God of the universe has a sense of humor too, right?  I mean he created aardvarks, zebras, and tse tse flies!  What’s up with that?  Oh I know that the Original Adam named them all but just how did he do that?  They were all such weird creatures!  So it follows then that humor can help us endure many kinds of extremes, even the ones you and I are facing today.

Take for another example the thieves that attempted to steal gasoline from an RV.  This is a true story:  instead of tapping off the gas line they ended up tapping off the septic line instead!  When the fluid started flowing it was not fuel it was the polar opposite:  stool!  So sad.  Such a righteous punishment I must admit!  And as a grateful owner of a travel trailer all I can say is:  Tee hee with a smirk.  ;}

I cannot say that I can relate to the paradoxical themes of life with much right now with much lightness of spirit right now, however.  I’ll just keep it simple:  there’s some good and there’s some that is not.

On a good note I am grateful to report a widening of social contacts of late.  I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church.  I appreciate the friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship.  All of this is good.  It’s amazing how all believers in Jesus Christ share a common unity even when the circumstances of our lives can be so different.  We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.

On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly.  Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone.  It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain.  Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day!  I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall.  So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time.  This treatment coupled with the wintry temperatures below freezing have brought incredible pain.  However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good.  Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!).  Just maybe these past 4 years have not been wasted after all!  It appears that each new treatment has prepared me for such a time as this:  we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .

There is so much to consider.  Will I continue on antibiotics long term?  Will my health insurances help us out or cut us off next week?  Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes?  When would I transition back to more herbal-with-pharm-grade supplemental interventions?  Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox?  How much more stress can my beloved husband, Steve, be expected to bear?  And how will we pay for all of this?

As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on anyways with my treatment for chronic Lyme disease.  I just wear long underwear everyday to keep warm!  We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully.  I know that to be true.  I have met many of them when we had a local Lyme disease support group.  I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to his or her recovery based upon the damage the infection caused to our bodies and our individual resources.  (See this link for more info on chronic Lyme.)  Perhaps my case was one of the more severe.  Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into my life.  There is so much to consider that simply was not on my radar over 4 years ago.

If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you.  There is hope!  You are not alone, Gentle Reader.  Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis.  Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness.  He sees you and will see you through what you are facing as He has done so for me and Steve.  He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).

May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory.  And, um, when we get our prized prey I’ll just say, “please pass the catsup.”  Squirrel on the Bar-B-Que anyone?  Ewwwwww!  :JJ

A different kind of Christmas

Perhaps it is a sentiment of many Dayspring and Hallmark greeting cards to define Christmas as “the most wonderful day of the year.”  For a believer in Jesus Christ, the day is one of the most meaningful:  celebrating the birth of our Lord and Savior.  But perhaps the most significant holiday is actually celebrated on Easter Sunday as we recall the sacrifice that Christ made in dying on a cross for our sins such that we may have everlasting life.  No sentiments are implied or required:  the truth is that He came to save, the truth is that He is Lord of all!

Isaiah 9:6-7New King James Version (NKJV)

For unto us a Child is born,
Unto us a Son is given;
And the government will be upon His shoulder.
And His name will be called
Wonderful, Counselor, Mighty God,
Everlasting Father, Prince of Peace.
Of the increase of His government and peace
There will be no end,
Upon the throne of David and over His kingdom,
To order it and establish it with judgment and justice
From that time forward, even forever.
The zeal of the Lord of hosts will perform this.

I can almost hear the victorious singing of Handel’s Messiah in the background as I read these words.  Such is the confidence that we have, the joy we know as believers in Jesus Christ!

Many days when my life is a “nothing burger,” these words are just about all that I have for comfort.  My Christmas and Easter in 2015 were not filled with either the people or activities of a typical Christian holiday.  There were no church services dressed in better finery, homemade treats enjoyed in the basement afterwards with the dearest of friends, or family dinners filled with laughter and much feasting.  The décor around here was the same as it is every day.  I could go on with all that was cut due to the ravages of severe illness but I won’t.  Perhaps you get the idea Gentle Reader?

I spent each of these holidays staring into nothingness for much of it yet also with nothing to distract me from seeking the face of my Lord.  My prayerful meditation was uninterrupted and peaceful.  Warm, loving glances came from my beloved Steve whose presence is one of the greatest gifts I could ever ask for in my life.  Even our furry friend Elle is always a special delight with the gentlest of brown eyes, the softest of fur coats.  I did get somewhat of a break during the middle of the day on Christmas in which we connected with family via Skype and the phone, MacGyvered a tasty meal of sorts, and opened some sweet gifts for our eighth Christmas together as husband-and-wife.  Yeah God for special moments like these!

In two days we will continue and conclude as many of these traditions as we can in a gathering with my husbands adult children and their spouses.  They graciously will attend to the mold/fragrance-avoidance practices needed for me to host them in our home.  Since it may be my only time to see them when they are in town from their respective States and countries, I do pray that I may be able to participate in every moment available.  They are wonderful young adults and I do love them so!  I have simplified our menu and Steve has begun the preparations.  We have spent extra time finding special gifts that would be meaningful; one of them may even serve temporarily as a different kind of “Christmas tree!”  We’ll see.  I still have to pull that one together!  Eeeek!

So if you too have changed things up a bit for this Christmas season, know that you are not alone.  I understand completely.  It’s o.k.!  This holiday along with Easter in the Spring have nothing to do with Santa and the white bunny carrying chocolate eggs.  These special days have everything to do with a decision we each make in our hearts about Who we will serve as Lord over our lives.  Where have you placed your trust dear friends?  With a personal relationship with Jesus Christ, we will have a celebration that will never be limited to a date on the calendar.

Charlie Brown Christmas

Nothing beats a Charlie Brown Christmas message:

And with that decision made to follow Christ, every day will be a different kind of adventure that transcends the moment into all of eternity.  Yeah, I’m on board for that one.  Will you be along too?  JJ

From the Do It Sick Chef: Let’s make something that resembles lunch!

The first video of my Do It Sick Chef series is now available on Vimeo!

In “Let’s make something that resembles lunch,” I literally get out of bed to make real food in a real kitchen that includes:  a veggie-n-meat entrée, ghee butter, and roasted turnips.  Roasted turnips?  Yes, you got that right!  Special diets require new and sometimes unusual food choices.  Just Julie will show you not only how to make these dishes but how to prepare the food saving money, time and energy.

Future videos that are already in the works will cover the topics of freezing foods for easier meal planning, a stand-alone segment on ghee butter, kitchen organization to save energy, and more.  You are invited to “Like” my Hope Beyond Facebook page to keep up with future videos and share your meal planning, preparation, sanity tips too.

Take care, Gentle Reader.  Lord willing, those of us battling serious illness are going to get well!  JJ

A Nice Overview of a Nasty Toxin Called Mercury

mercury, mercury toxicity, mercury poisoning, amalgam, dental amalgam, neurotoxin, neuro, seizures, convulsions, dentist, root canals, dangers of, extraction, mercury freeSince I’ve been affected by the neurotoxin called “mercury” and have invested considerable time and resources into this topic, it seems appropriate for me to provide some resources here.  I have blogged about my own health issues related to mercury poisoning.  My beloved husband saw my telling test results, witnessed the process of detoxification, and has championed the benefits in improved health that have followed.  Then I realized that there is some background information that I may not have shared with him or in Hope Beyond.  Steve still has questions.  Maybe you do too, Gentle Reader?

Let’s start with a basic video from a scientific perspective of a lab.  Looks like mercury is indeed toxic and gives off dangerous vapors:
 
Now apply the information to a tooth in a human body and the typical scenarios people experience when it is in their mouth.  Note that other studies show body burden increasing within hours not just 30 days:
 
Here’s more detail about dental amalgams, its effects, and how the rest of the world has addressed mercury toxicity; this one is older and a little quirky.  They call for more research (and that research is now available):
 
But how can mercury affect the body?  Here’s another genteel overview from a dentist with some studies cited and an explanation of the general mechanisms of action.  She is one of many, many who have published videos on this subject.  Note the opening remarks about the lungs (which is where most mercury enters the body via vapors):
 
The dentist noted above also has a video series that is well thought out, easy to understand, and contains nice graphics with no hype graphics.
What has been discussed in the videos above is inorganic mercury.  To round out this introduction I must add another form which is “organic” or methylmercury from fish.  Check out this case study from a city devastated in Japan by mercury from industrial waste.  If you watch my videos on YouTube you will see how I can relate to the wretched convulsions of Minamata Disese.  Skip to other videos in the series on Minamata Disease for additional history too:
 
In the future I will chronicle my own discovery of mercury poisoning, the best treatment for me, and how reducing toxicity affected my health.  Just recently I have found that detoxing from mercury is the largest part of my restoration to health.  For the treatment approach that I would recommend as a fellow sojourner (not as medical advice!), please see the Mercury Toxicity Overview  page of this website.
And please be encouraged, Gentle Reader.  We are going to get well!  JJ