Tag: neuro

Weary from the road

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Christmas chocolate.small

“They say no pain no gain

I say roses are worth the rain!”

Or so the song went that I wrote back then

When “recovery” seemed like something I could attain.

Decades later I realized the wisdom of Robert Hasting’s Station

A place where you reach your goal, Nirvana, the prize, all you’ve been awaitin.’

Too bad life is often not like that:  the good, the bad, the ugly all take their turn

You never really know what you are going to get when your head lifts from the pillow at dawn.

And so goes my new treatment when things have gotten worse before getting better,

How is this even possible when it appeared the Lord orchestrated these steps to the letter.

Now faith means holding on to that which is unseen for the promise of my Lord’s Day

When the suffering will end, be redeemed for glory whether it comes soon or some other way.

I borrowed my beloved’s belief tonight when mine was just too shaken to go on any more–

With love in his eyes, his heart he prayed for healing and more once again like so many times before.

We know our Lord hears us and that we have His will, His heart within our own

I just pray I can hang on this weary road that seems to have gone on just too long.

[Please send chocolate . . . pure unsweetened cocoa butter works best right now.  JJ]

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My hope this night is the promise of my Lord and Savior that, “He will wipe every tear from (our) eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”  Revelation 21:4  Somehow, someway, I am going to make it, Gentle Reader!

The Price of Admission

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Garfield2016-01-15

Garfield tells it like it is and that is the way I like life to be as well . . .  No pretense here, ever!  He must be chemically sensitive too?  I digress . . .

To get well from a serious illness, one consistently pursues recovery as if he or she is on a journey, not sprinting as if in a race.  My journey of late has included a trial of molecular hydrogen, nebulizing sea water to ease a chronic sinus infection, and experimenting with a Glutamate-Aspartate Restricted Diet (GARD).  Yeah it’s never just one thingy with me!

Some additional research and a consultation with my Doc suggested a link between the GARD, sinusitis, and latent Lyme disease that might be addressed with a course of antibiotic treatment.  Yes, IV or IM Rocephin may address all three.  Rat studies have shown that Rocephin can lower glutamate levels thus helping to raise seizure threshold.  Since I am a card-carrying lab rat anyways it seemed logical to go for a trial of antibiotics for a week then re-evaluate my tolerance for it during my next Doc appointment in 7 days.  Very likely the treatment will continue for several weeks.  Today was treatment day #1.

I began this process pressing forth to complete a lab test beforehand so as not to skew the results with the upcoming antibiotic.  The preparation required a restricted diet of only 2 foods for 24 hours, fasting, and some stressful sampling procedures all ending just one hour before the first IV treatment at the hospital.  The Lord sustained me as I assembled the kit and wolfed down a supremo salad that I had prepared the night before.  I left our home shortly after the FedEx truck picked up the completed test kit while giving our dog something to bark, bark, bark about.  The wings of my Savior, Jesus Christ carried me to the hospital on just 3 1/2 hours of sleep:  less nervous and ready to blast the heck out of whatever might be keeping me sick.  Let’s do this!

Not so fast though!  Just before heading into the Outpatient Clinic I had a violent expulsion of stool!  Whaaaaat?  Good golly!  Looks like the Lactulose test prep was taking effect all at once!  Now what should I do?  I was soiled through all of the layers of clothing I had worn to keep warm.  Fortunately this all happened in a hospital where they have linens and hospital scrubs available.  Alright so I cleaned up, put on the call light, confided my plight to one of the nurses, changed my fashion motif a bit, and returned to my chaise lounger a little wet, a little shook up from everything.  let’s do this?

The biggest hurdle for me in receiving the 50+ IV treatments and 50+ lab draws I’ve had these past 4 years has always been the needle stick procedure.  Virtually every time a needle either goes in or out it triggers massive convulsive episodes.  Fortunately Jennifer, the RN, has more tricks for poking rolling, spindly veins than anyone I have ever seen for care.  The first stick failed resulting in the usual shakes and shouts.  So we just waited until my world calmed down and I got a few more moments of the best distraction ever under my belt:  HGTV on the little swing-away monitor at my station!  Watching Island Hunters and the like has saved me from tears many times for sure.  (Such a treat!  We don’t have cable service at home.)

Gratefully the second stick was successful.  Gratefully there were no ill effects during the infusion just fatigue.  Gratefully I was able to run an errand to the meat market secretly in wet jeans underneath my scrubs before returning home.  Gratefully the nap came easily after showering and without seizure attacks.  The hell returned later in the evening but overall I got away with at least one fewer episode today.  God is good.  He carries me through so much!

I ask the Lord often why things always have to be so difficult for me?  I really don’t get any answers other than to know that He sees my suffering and promises to love me through it all.  That love is tangible in the graciousness of my beloved husband, Steve, who listens to my stories and sees me through the roughness that characterizes some part of every day.  Perhaps someday I will get to see why the “price of admission” for me to get through my life has been so devastatingly high.  This stuff ain’t for wimps ya know!  In the meantime I will carefully wrap the IV in my arm before showering, clean myself up, run more loads of laundry, and shed some tears along the way.  I am not alone and know what to do.  I have been through IV treatments before and so have many of my fellow sojourners.  We can do this!

At least now there is fresh bacon in the house.  And that Gentle Reader is a mighty good thingy!  I am sure Garfield would agree!  JJ

A Plausible Case

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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

 

A Nice Overview of a Nasty Toxin Called Mercury

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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

He really cares: Part 2

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Please forgive me for leaving you hanging, Gentle Reader!  I left you hanging by a thread in this blog almost 2 weeks ago.  Clearly I made it out o.k. from the doctor’s office!

charcoal sketch, sketch of woman, side view of woman, head shot, female drawing, picture of lady

Since there were many hairy details in the horrible situation I was in on July 29th, I will shorten things up a bit here.  In my last post, I ended whilst lying on my side, paralyzed and inches from the floor after a convulsive episode in the exam room of a Physician’s Assistant (PA).  The second of two severe seizure attacks had occurred since entering this room and the second of two episodes of neurological collapse was in progress.  Eventually the PA returned and forgot everything I had ever told her about what to do in this circumstance; she even forgot that in the first episode (that she had witnessed) I was unable to speak or move.  All she kept asking was, “Do you want me to call an ambulance?”

Finally I was able to break through what was happening in my brain to express the greatest need in my life at that moment, “PLEASE REMOVE MY GLASSES!”  As she wrenched my neck and lifted my head I screamed in excruciating pain from having had my eyeglasses and sunglasses wedged against my face for so long.  Extreme sensory sensitivity accompanies the worst convulsive episodes; pain in particular is magnified as if you had tried to electrocute me!  So when the PA tried to remove them, it was as if a bolt of lightening had jolted through my face!  She asked again about the ambulance.  “Did I want to get up onto the table to be more comfortable?”  I could not speak or move at all.  Then she left.  A long time later she returned.  Then she left.  A long time later she returned.  Then she left.

To pray was my focus since the trained medical professional was of no help!  Thankfully after a long time, it was the Lord Who helped me twist and turn my torso so I could lie on my back across two chairs with my legs pulled up underneath me.  It took about a dozen tries before I could lift my head segmentally to reach a sitting position with my head supported by the wall behind me.  Never did a wall seem so comforting . . .

Eventually a nurse, the really sweet one, came into the room with a wheelchair so I could be taken to the bathroom.  Herein I benefitted from my training in transfer techniques as an occupational therapist.  My arms were starting to regain motor control but my legs were like dead weight .  I lifted them one at a time with my right arm (more functional than my left) off of the leg rests of the wheelchair and onto the floor, braced myself with the grab bar along the wall next to the toilet and pivoted myself around; I reversed the procedure with more adaptive techniques to do all of the things I needed to do in the bathroom.  By the time I was wheeling myself out of the bathroom, the really sweet nurse had returned to take me to the hospital in the building next door.  At last, over three hours later and feeling majorly beat up, I would be getting the IV fluids as ordered!

Unfortunately the IV “Lactated Ringers” didn’t help me much.  The nightly convulsive episodes returned followed by wake-up tazoring the next morning.  I was so beat up from everything.  The following evening I did make it to the grocery store when things had temporarily stabilized.  Such an ordeal!  Calming my anger at my medical providers has taken every day since then.  The doctor never mentioned it when I saw him last week.  He did not even ask if the IV fluids helped me to feel any better.  Sometimes that guy is just too focused on test results (or whatever) to examine the overall process of this patient’s sickness, the clues that might be hidden in plain sight.  Oh well.  The second appointment to review additional test results last week was cancelled (as are about 35% of his appointments).  A minor flare up of the ol’ anger distracted me once again, gratefully for less time . . .

So who really cares if I live?  Suffer?  Die?  I have spent the last 15 days meditating on this.  The real question emerged beneath these cries and it was not to find out if anyone really cares or not.  There are people in my life who love me and for this I am grateful.  The real question turned out to be whether or not I had submitted this illness to the Lord as a living sacrifice.  Who is really in charge here?  Did I offer it to the One Who sees all, loves me more than anyone?  Could I view laying this illness at the Lord’s mighty throne of grace as an act of both obedience and worship?  He calls believers to do this, by the way in Romans 12:1-2

Therefore, I urge you, brothers and sisters, in view of God’s mercy, to offer your bodies as a living sacrifice, holy and pleasing to God—this is your true and proper worship. 2 Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.  (Romans 12)

The Lord knows that our bodies are not perfect and that our world is not perfect.  Why would the God of the universe desire me to make alms to Him with my weaknesses?  He desires our devotion in all things and loves me and you just as we are.  But wouldn’t he rather have a tithe or act of service?  NO!  He is God not some distant authority figure or Santa Claus.  He loves us, has mercy on us, completes us, pours out His blessings, defends us, and promises to make good out of the fallen things of this world no matter how ugly.

1 Peter 5:6-11New International Version (NIV)

6 Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. 7 Cast all your anxiety on him because he cares for you.

8 Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. 9 Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen.

I am holding out for the promise that lies within these words.  He will restore me in due time.  Who cares for me?  Who cares for you?  The Lord Jesus Christ, that’s Who!  In Him we will find rest no matter what may come our way.  We can be sure of it!  JJ