A leaning, a leading?

Palisades Reservoir, lead poisoning, testimonial, summer lake

So I’ve had increased convulsive episodes lately and especially since my beloved came home from a trip. There was fragrance on his person and stuff; that night and the next 3 days went poorly. We suspected the fragrances as a trigger and proceeded to clean everything multiple times. It was yet another sad and frustrating experience to endure yet not without some redeeming value.

Just prior to Steve’s departure for 6 days, I began a new treatment for a fungal sinus infection. I was tolerating it well and had the best 6-8 days than any in the prior 7 years! We were encouraged! 3 days into his trip I developed abdominal pain but attributed it to maybe some stress. It never resolved.

When Steve came home, there started to be convulsive episodes within 2 hours of this compounded sinus treatment. Since I have not tolerated medications for this condition in the past, I was pleased when a functional med Doc found a colloidial silver/EDTA preparation to try. The CS treats the fungal infection and the EDTA helps break up biofilms (which makes the infection harder to treat if missed) in addition to acting as a preservative. I decided to tough it out and continue with the treatment. Surely a chronic sinus infection could make me more vulnerable to noxious smells; the membrane between the sinuses and the brain is tiny. It’s why certain smells (like the baking of bread) can elicit such strong memories.

Lying down and tipping my head back also triggered episodes. Yes I have neck and cervical disc issues. The vertebral artery in my neck is positioned in a vulnerable way. Things are better overall with the improved positioning of my head/neck/jaw using specialized dental appliances. Recent application of specific vagal nerve stimulation techniques had helped both prevent and end convulsive episodes. But all of them became ineffective these past few days.

There appears to be another factor and today the Lord showed me what to do. EDTA is also a chelator of lead. For me, just starting a small amount of a detox agent triggers dumping of the respective toxin. Being post-menopausal and osteoporotic has brought increased lead toxicity noted in blood tests. I’ve already drastically reduced both levels of mercury and many other toxins discovered in numerous lab test, treated in numerous protocols. Today it was time to revisit the lead piece of this health puzzle!

It took quite awhile to communicate to Steve a plan of attack as my body was contorting, erupting in maddening/spontaneous screams, struggling to breathe and sequence the facial movements to produce words. My hands bent backwards into an arthritic/extension pose you might say resembled that of a zombie. My legs would flap together-and-apart violently and repetitively, uncontrollably. My head-and-neck and upper torso writhed in slow motion as I struggled to raise my body up to drink the concoction he would feed me through a straw. And finally when there was a break so I could breathe, sequence the oral-motor steps of swallowing, close my lips around the straw, and drink the potion we created:

Aloe water for gastric comfort
Full spectrum binder from Quicksilver Scientific called the Ultra Binder
Fiji water that contains silica that binds aluminum
Large dose of a zeolite product called CytoDetox for lead and any other heavy metals not covered by the Ultra Binder

I often respond energetically to rescue remedies; liposomals are especially powerful due to their rapid absorption into the bloodstream through the mucosal lining of the mouth. I held some of the liquid in my mouth, around the dental appliance. Then I drank more water.

It wasn’t long before the episode slowed then stopped. An hour later, my abdominal pain was half of what it was. Did you know that abdominal pain is one of the primary symptoms of lead poisoning? I suspect that the EDTA being sprayed directly into my nose and quickly being absorbed into my bloodstream got lead moving quicker than I could chelate out of my body on my own. The Ultra Binder has stopped episodes before. Why else would things turn around so quickly if it wasn’t due to a relatively acute toxicity?

We really want to be able to see family for the upcoming holidays without the heartache and drama of this devastating illness. Day by day we seek the Lord’s wisdom and pray for mercy, for healing. Just when recovery looks promising and there is relief, a horrific setback seems to follow. I can’t even embrace my husband right now for fear of having to pull away in another injurious, head-banging episode. Three weeks ago I went in and out of the worst emotional slump of these past 7 years then realized it was the lies of Satan himself I was believing. I covered it with the truth of my Lord, Jesus Christ Who has promised me in His Word a hope and a future.

So I have a new focus for treatment and looks like some really good tools are already on our kitchen counter, within reach. Will it be fruitful? I really don’t know. Tell you what though, I am still not giving up. There IS hope beyond what we can see and the proof lies with the empty tomb, the risen Christ, the reason for the Christmas season before us. And that keeps me going no matter what comes in the day, in the night.

I hope this is true for you too, Gentle Reader. There is hope beyond what we can see.

With love, JJ

UPDATE:   Functional Med Doc says it’s not the EDTA but a mold hit from raking leaves a few times recently.  I dunno.  I continued having convulsive episodes within an hour after the sinus spray treatment and had to stop it.  Time to regroup again!

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

Not just another day

In this moment I feel quite normal.  I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off.  You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .

How come the wretched hellish experiences of mine have become a normal occurrence around here?  Here’s what I mean:

  • Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
  • Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
  • Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
  • My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
  • Expenses beyond belief take away tremendous resources intended for the future:  a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
  • Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.

Today was not just another day.  I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes.  This past weekend I missed the lovely snow softly falling outside our bedroom window:  our first major snowfall in the Midwest.  I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow!  If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks.  Those episodes with respective recovery periods totaled about 15 hours today alone.  Lord have mercy!

This is no where near normal.  Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy.  I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic.  One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday.  Somehow I did get some Christmas cards ready-to-go however!  Wow.  That is simply amazing.

Please forgive me that my tone is angry tonight.  I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me.  There are new problems with which to contend.  Tonight I am in survival mode.  It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning:  an expensive treatment of merit I seriously question.  Chronic Lyme disease?  Heavy metal toxicity?  Which one is it already?!  Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago?  Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . .  At least my back is feeling some better though.  Hooray!

So here’s to Christmas cards getting together and less back pain.  I have a roof over my head and food in the frig to munch on shortly.  My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so.  Well there ya go.  Some sweet signs of normalcy do exist after all amidst some sweet blessings too.

I just can’t stay upset very long with you listening Gentle Reader.  Thank you.  Here’s a cartoon for you.  You rock!  JJ

bedbugs

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

White light and angels

They were tall, white angelic beings moving towards me amidst a glow of an even brighter light.  I did not understand what was happening at the time as I was just waiting there with the figures floating towards me.  More of them were to the right than to the left; or maybe I could not see them as if blinded by sunlight.   But this was not sunlight.

I sensed them coming closer, around behind my right arm as if to escort me somewhere.  I began to drift forward.  Then I stopped.  Why had I stopped?  Was not this the right way to go?  And then the words spoken to me were felt more than heard:  it is not time yet.  And they were gone.  No light.  No angels.  Just the darkened images remained inside my mind that are always there when one’s eyes are closed.  When I opened my eyes I saw the inside of the camper all around me.  Most importantly, I WAS ALIVE!

Quickly realizing what had just happened, I groaned for strength deep within me that was not available in my listless frame.  “I have to open the windows!” I exclaimed inside my head.  Horror nearly immobilized me.  Could I do it?  Could I reach it?  Which window?  How do I open them?  Let’s see, first I have to get up on my elbows to push myself up.  Then lean forward to create momentum and reach out my arms to grab the back of the dinette.  Slide forward and get my legs onto the floor to bear weight to stand.  There, that’s it.

By the grace of God I was able to get the window opened and reach up to open the ceiling vent further before carefully collapsing back into bed.  “Just avoid hitting your head on the bunk over you,” I thought to myself.  Soon I could feel the rush of cool, fresh air on my face and arms.  I took in a deep breath, reviving further.  I was going to be o.k.  Sigh.  What the heck had happened to me?

Some might call it a near-death experience.  Others might label such an experience as a hallucination from toxic fumes.  I prefer to call it an experience in another dimension that I cannot fully explain.   Perhaps a second chance at life.  For several hours prior to this vision of sorts in my “mind’s eye” (not really seen as I looked around and not really imagined with my eyes closed) I had struggled with seizure attacks and convulsions.  This happens about every week or so that I endure much of a day with continuous noxious episodes.  This past weekend landed me with two days like this in a row!  Such is life in the mysterious world of mercury and unknown toxicity.  The typical episode triggers of hunger, thirst, needing to void, feeling cold, fragrances, waking up, falling asleep, mold, or food sensitivities did not apply that day.

We had arrived in Alabama at about 4:00 a.m. after over 15 hours of travelling by truck, towing our travel trailer cross-country.  Temperatures the next day were still around 40 degrees in the deep South when my beloved ventured off to see his son-n-wife at Fort Rucker Army base nearby.  It was usual for me to stay behind after long ventures to rest up, hoping to visit with everyone later the next day.  After sleeping about 7 hours I had made myself a breakfast of my special diet leftovers and yummy coconut almond milk.  My tummy was satisfied yet I still felt groggy so I returned to our comfy bed.  Gratitude filled my thoughts for having a safe place in which to retreat with all the provisions that I would need away from home . . .

Clearly some provisions I did not need after all!  Our crochety campground water spicket was frozen solid so we were unable to hook-up fresh water to the camper and use the toilet as designed.  Gratefully some of our emergency gallons of water were starting to thaw so we had a reserve for flushing the toilet and drinking the next morning.  But unfortunately since we had departed from the frigid North the day before, we had to take our entire journey with a camper still winterized with “non-toxic” RV antifreeze.  All of the drains and toilets were still filled with the scent of the pink stuff.  Not thinking about the mixing of products, we used some windshield washer fluid to flush the toilet a couple of times.  Then when I was concerned that the toilet waste solids would congeal, I tossed in a Bio enzyme pack, earth friendly of course, with barely a scent of pine or something.  Pink and blue and green make . . . ?  Something not nice, I now understand!

Before we crashed into bed, we had already opened the overhead vents to help control condensation inside our unit.  What I did not realize is that a window I had also opened in the morning was above the venting for the propane furnace!  I’m not sure what chemical compounds might have made their way back into our living space since the carbon monoxide detector had not been activated.  Maybe I just don’t do well with propane gas altogether.  Who knows?  What I do know is that the noxious mixture nearly sent me to heaven!

Sadly after eating that morning it was all I could do to get to the bathroom and collapse onto the bed instead of the floor.  I could not, did not move for a very long time.  Slow thoughts of my inability to move, recognition of my awkward positioning, wondering how long Steve would be gone, the location of my cell phone all dawdled through my head.  And they stayed there.  There was nothing I could do about anything and I wasn’t even sure exactly what to do anyways.  My thoughts were dulled into a kind of motionlessness that was similar to my poisoned body.  In time the white light and angels came.  In time I was able to get up as described earlier.  In time Steve came home and found a broken shell of a woman recovering quietly in our bed.  Many tears followed.

*************************************

Death is a funny thing.  You think you know all about it from watching others pass away then transitioning into a waxy state lying in a wooden box placed in a funeral home parlor decorated like an old rerun of The Beverly Hillbillies.  Sermons, Biblical passages, and Christian authors have much to say about this life and the next but until you face it yourself the words simply won’t mean much.  The unexpected BENEFIT of having a severe illness that brings daily seizure attacks and convulsions is that every day I get to face death in addition to the newness of life.  My breathing stops and it starts back up again.  From a spiritual standpoint, THIS IS NOT A BAD THING!  As a result, each day I take practically nothing for granted as life and some goodness are imparted to me.  This process is extremely humbling.  I have also learned that death is not something to be feared . . .

Many years ago a friend, Louise, shared with me an audio tape of Pastor David Jeremiah in which he stated,

“God’s man in the center of God’s will is immortal until God is through with him.”

Oh yes.  I have now lived through many brushes with death and seen this to be true!  So where do I go from here?  I’m not quite sure, really.  What I am sure of is that I will probably write about it!  You will be the first to know my beloved Gentle Reader when the inspiration comes.  Until then how about if we keep the windows open on the opposite side of the furnace, take care of ourselves as best we can and keep our eyes fixed on the Lord.  The light of His love will surely shine upon us all the days of our lives until He calls us home.  As for me, I will be ready.  How about you?  JJ

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