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!

A Plausible Case

As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness.  I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick.  Then the story changed a few times . . .

Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:

  • Hours of daily convulsive episodes, every single day
  • Headaches
  • Painful shoulders, forearms, hips, neck, jaw, and more
  • Ringing in my ears
  • Multiple severe chemical, mold, and sound/light sensitivities
  • Significant nutritional and hormonal deficiencies
  • Fatigue
  • Episodic cognitive and emotional setbacks
  • Periodic night terrors, nightmares, waking terrors
  • Weakness and deconditioning
  • Air hunger and chest compression symptoms
  • Neuropathies
  • Severely disrupted sleep/wake cycle
  • Food sensitivities despite a restricted diet
  • Gut dysbiosis
  • Inability to consistently perform activities of daily living or work
  • Social isolation
  • Intolerance to treatment

So in other words, my life is kinda hellish a lot of the time!  Today was no exception.  Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth:  my Stevers.  We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day.  It was the “same story, different day” around here.  And something else happened too:  I may have discovered another piece of this wretched illness mystery:  Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.

No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update.  It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr.  “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74).  There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens  transferred in tick saliva after a bite.  In two weeks I will have a diagnostic procedure in which these tests could also be performed.  Whoa Lord.  Is that why I felt led to add an anti-microbial to my anemic treatment plan?

God is good.  All the time.  God is good.  Today I felt led to add back a probiotic that I actually was able to tolerate this time.  The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen.  Or to any abdominal exam.  Or to physical therapy to the hip flexors in the lower part of the abdominal wall.  Or to certain foods.  At any rate, a new door has opened and there are new possibilities for getting well.  Perhaps it is time to re-visit the diagnosis of Lyme disease.

Stay tuned.  This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station.  In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt.  We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do!  (I told you that I worked in an amusement park one summer didn’t I?  Yeah, Cedar Point is really cool!)

Cedar Point gatekeeper_wallpaper

 

Can we talk here?

One of the most hilarious comedians in my humble opinion was Joan Rivers.  I got to see her live in Las Vegas many years ago and many of her skits are still fresh in my mind.  She would blurt out under her breath, “Can we talk here?” just as she was about to dish the dirt on a celebrity or delve into the hairy details of a sensitive topic.  While in more recent years I became a fan of Christian comedienne Chonda Pierce more than Ms. Rivers yet I will always remember this phrase, drawing me close, now drawing you close as well.

Can we talk about the bowel?  I have become more acquainted with this topic than I really should at my age!  Usually a discussion of bowel habits marks the conversation of persons over the age of 65 and especially those over 85.  I know this.  I have worked with thousands of seniors as an occupational therapist.  Improving independence in the skills required in toileting is one of our areas of expertise.  Need a raised toilet seat?  Secure handhold when transferring onto the commode?  Yeah, that usually triggered additional self-disclosure from my client on his or her last BM which went beyond my area of expertise!  (For more on toileting accessibility, see Part 1 and Part 2 in my professional website, Two Step Solutions.)  Older adults often talk openly about their bodies in such an intimate setting you know.

toilet, accessibility,accessible toilet, get up from toilet, toilet safety frames, grab bar, knee replacement, toileting, toilet transfers fall by toilet, prevention, prevent

From all of this I was determined NOT to talk about such matters . . . until today.  So let’s get to it.  The bottom line is that gut motility is a natural body function for all of us, right?  Soooo, I ended up in the Emergency Room this past weekend for abdominal pain and back pain.  Both exacerbated the daily convulsive episodes such that I could not bear to be me anymore!  The staff of the Regional Medical Center administered IV fluids and a battery of tests resulting in the seizures and back pain diminishing while the abdominal pain continued.  Flash forward to Monday afternoon and a call to my Primary Physician’s office.  Unfortunately I soon discovered that he was to be out of town on a family emergency for the entire week!  I prayed for him and then I prayed for me.  What should I do now?  The tummy pain was continuing.

By the grace of God and by phone, my incredible family doctor was able to figure out what to do and recommend treatment.  The CT scan had shown a severe bowel obstruction (B.O.) but the ER Doc never told me about it!  Imagine that!  I was admitted to the emergency department with the primary complaint of abdominal pain and no one bothered to tell me the findings clearly stated on the CT report.  Geez!  I have no idea how the “B.O.” came about (little humor here folks!) but today I am grateful for an amazing Doc and phone nurse willing to get medical records and review my case with him when I was unsuccessful.  The treatment worked!  Geez again!  And in the process I was introduced to an unsweetened form of a supplement that I believe I can use on an ongoing basis; I have battled for 4 years finding magnesium that I could tolerate; magnesium is critical to my recovery.

I hear-by recommend Natural CALM!  You will now find an unsweetened version of both Natural CALM and Lily of the Desert Aloe Vera Juice in my list of Julie’s Favorites at the end of this webpage.

I am so glad that we can talk here!  I know that this topic will touch the life of someone out there so I am not ashamed to mention it today.  Here is my takeway message this afternoon:

If you feel like you are going crazy, you are not.  It is just a feeling.  Try something new.  Get help and stay engaged in the process until you find an answer.

Don’t be afraid to politely ask for help even when others are busy.  Often the busiest person, if they agree to help you, will be the best person to get the job done.

Always say “thank you.”

Keep your bowels moving.  Keep your body moving.  Keep your mind moving forward.  Keep your eyes fixed on Christ.  Keep tough . . . you are not alone!

That’s it Gentle Reader.  Feel free to pass a link of this post onto someone who might need it.  Young and old, I am so glad that we can talk about it here . . .  :JJ

Six Deer and a Skunk

We were heading south along a remote section of a newly created road when six deer, one by one, carefully stepped across the road in front of my truck.  My husband was driving and proclaimed that he was glad that he saw them just in time to slow down!  My proclamation was the awe of the gentle animals crossing our path on a night when the witness of God’s creation in the dark was the last thing from my mind . . .

Yes, we were on the way to the Emergency Room again.  After the third night in a row where convulsive episodes escalated with the setting of the sun coupled with unusual right, lower abdominal pain, we decided that our threshold had been reached.  The decision to drive off to the ER is never and easy one.  Am I really that bad?  If I am not dying should I just wait and see a little longer?  Now that our sixth trip in four years has come and gone we both agree that having an evaluation in the middle of the night is no worse than the alternative.  This trip was unusually unpleasant, however.

We waited almost 2 hours before being escorted back to exam room 22.  During that time we witnessed the collapse of a young woman in a wheelchair whose urine bag tube dangled over the edge of the leg rest and two family members looked on with worry.  We prayed for them.  Moments later one of the several children in the expansive waiting area spontaneously vomited all over her mother and the floor (about 15 feet away from us).  The mother and a nurse-type staff person whipped into action including spraying everything with a sure-to-be-aromatic cleaner.  In my heart I prayed and in the moment we moved to another section of the ER as I donned my mask so as to avoid the fumes and vomitus aerosols from further exacerbating the convulsive episodes.  In the distant section in which we landed was a double-wide chair that made a makeshift bed for my own weakened frame.  We later discovered that by the end of our tenure at the hospital there would be EIGHTEEN car accident victims that would filter through the emergency department that night.  Lord have mercy!

My own challenge was significant yet still I was filled with gratitude that it was not as bad as those around me.  Much later and somewhere after the halfway mark of the IV infusion of sodium chloride, the convulsive episodes subsided.  Yeah God!  Then came the abdominal CT scan and pelvic ultrasounds.  Each were laden with their own versions of torture just for me.  I guess I’m just “sensitive,” right?  (If I hear that phrase one more time I’m going to scream!)  No matter, the noxious symptoms accompanying these tests mixed with tears and additional pain were bonuses upon which I had not planned that night.  For example, I had planned ahead and brought my warmest fleece jacket for covering up in between procedures.  It just wasn’t enough to counter the cold life-size tongue depressor gurney of the refrigerated CT scanner!  Another episode added to the collection.  And for me, pelvic ultrasounds are very painful.  I was there for abdominal pain, right?  Oh yeah.  “Just breathe deeply honey.  You’re doing great . . . ”

Sometime later the nurse assigned to me returned.  She had already navigated through the comfort and pain medication options that I could tolerate then brought the latter in the wrong form for a person whose stomach was empty.  I declined.  Pain management Plan B never arrived.  Later I was sobbing after the ultrasound (US).  The US technician activated my call light requiring me to ask for my own pain medication to which a nursing assistant responded.  Someone beyond the closed glass doors and pulled curtain decided that a relaxant for the gut would be a good choice for me.  Perhaps that was indicated?  But the nurse appeared with an 8-inch long syringe including a 4-inch needle that was bigger than those I had become acquainted in my lifetime!  I thought surely she would administer it into the IV line.  Nope.  She started to pull up the sleeve of my hospital gown.  With horror I wondered how so many cc’s of fluid from that big of a needle would ever penetrate my deconditioned arms.  “It has to be given intramuscularly,” she instructed.  “How about my hip?” I replied.  And as I turned to reveal the warmth of my skin buried beneath 2 blankets and a flimsy gown I began to freak out.

“No.”  “I don’t think the pain is bad enough to endure the pain of an injection like this,” was all I could blurt out.  She said “fine” and some trained nursing replies as she discarded the second drug that I wondered if or not would be added to our massive bill that night.  She left the room.  And then I began to cry and cry and cry.  I just couldn’t take the whole ordeal anymore.  I wept some more.

Within the hour we were making our way to the all-night cafeteria in that large Regional Medical Center.  My beloved, Steve, and I scarfed down more food than we had in a long time!  French fries are a great comfort food at 2:30 in the morning!  The salads were reasonable too.  At last my brain and personhood began to revive.

Steve drove us home into the dark and near-drizzly night.  Perhaps he was a bit cautious as we went, knowing the numerous auto accident victims that were our unseen neighbors in their own suites at the hospital.  “How bad were they injured?”  I wondered.  Oh my Lord, please comfort them too.  My mind drifted to the half-dozen deer that welcomed us before the bright red lights of the “EMERGENCY” entrance had illuminated our path 4 1/2 hours earlier.  I felt so much peace when I had seen them.  It was like the Lord was showing me that things were going to be alright.  Then again, their crossing was followed by the stench of a skunk!  What on earth could that mean?  Who knows?

Maybe the deer were “skunked” before they crossed the road.  Hunting season has begun dontcha know?  Maybe Steve and I we were somehow skunked too.  We made our best decision and ventured out to the hospital instead of what most couples do on a Saturday night.  And through it all, my beloved Steve was a champ the entire time.  He always is, dontcha know?

Some of you know that in about a month the number of years that I have been sick will exceed the number of years that I have been well during my marriage to Steve.  When presented with this observation Steve never flinches and repeats his vow of promise to love me forever on either side of the road of life.  Sigh.

headstone, marriage vows, til death do us part, cemetary, his and hers, cemetary plots, funeral, graveside service, Christian marriage
Til death do us part . . .

Oh my Stevers.  YOU my love are such a precious dear!  JJ