Lyme seizures – Jesus is for the Wounded

Treatment Update

Published on November 23, 2015November 24, 2015 by Jesus is for the WoundedLeave a comment

outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter. If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down. But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied. Ha! I would love for my personal scale of symptoms to be at zero. I would love for the intangibles wreaking havoc in my life to be less than nothing as well. But that is just not how it is. This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day. That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity: about 3 days each week. That stinks. I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living. Steve had to physically care for me (from toileting to feeding) about four times each week. This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens. An occasional meal out with Steve has ceased. There even was a blow-up with my Doc in which he suggested I might work with someone else. He admitted that he doesn’t know what to do. Fine. But who else would that be?

So here is my status:

Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well. Flare of systemic Candida is one possibility.
Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
Social isolation continues to be a problem. I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive. There are often episodes after eating and I do not know why.
Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome. I bring my own sheets and graciously they avoid fragrances around me. They are saints!
Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days. Recent exceptions: two wakes!
Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile. Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well! Oy vey.

So now my pity party is over and I have nothing left to say. I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle. Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief. My husband Steve carries the burden of all of this in his own way. He is a saint and my hero. Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going. Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes. Yeah God. However I am very stressed about the upcoming holidays. Maybe there will be a “Christmas miracle” at our house too? Lord willing, the numbers in my life will improve in a positive direction. In the meantime I will be hanging tough. It’s the best I can do. JJ

senior numbers

Bacon as a way of life

Published on May 3, 2015October 26, 2015 by Jesus is for the Wounded2 Comments

So my beloved says to me, “look at how far you have come,” related to my diet. Indeed. When we first met I was eating gluten-free, low sugar and fat, largely organic, and sweetener-free, and dairy-free foods. I cooked a lot and was very particular what I ate at restaurants, often bringing my own nuts or dressings. Supplements? Yeah, in due time with my new doctor at the helm my pill box burgeoned to over 60 doses of something per day! Then part of the story got crazier . . .

As severe illness set in, the supplements would change and almost disappear as time went on. I could not tolerate any supplements at all after a brief hiatus required during overnight testing at the Epilepsy Center, University of Indianapolis Methodist Hospital. By then I had added a low oxalate and Candida diet too. After A YEAR on all of this with daily bone broth too, my brain fog cleared and my gut started to heal. They say that 95% of your immune system is in your gut. Perhaps part of your brain health is there as well? (Now that last part could lend itself to some embarrassing teasing if I stay here too long. Let’s move on!)

When dental pain increased, my nutritional sustenance all went into the VitaMix for about 6 weeks. I became the master of the pureed diet and many soups, sauces, smoothies, etc. My gut health slowed yet the convulsive episodes triggered by chewing diminished. Gradually I got back to a chopped diet which is where I remain, 4 weeks post surgery for the extraction of two root-canaled teeth. Healing continues. It is wonderful to be able to chew better!

Then the convulsive episodes that had diminished some returned to their prior level: 2 to 5 hours per day. So sad. Over three years into this time of serious illness and still no one has figured out how to stop them. I fasted for 24-hours, drinking only water and praying when my brain cells fired in the right direction. The episodes stopped. As intense hunger pangs overtook my weakness I decided to break the fast with an apple: easy to digest and surely a boost to my low blood sugar. I did not expect what followed. One of the most violent types of convulsive episodes started my beloved hubby out of a sound sleep and sent me into an enlightened frenzy. Enlightened? Yes, this episode was triggered by glucose!

That night and the days thereafter I quickly ventured into a ketogenic diet. I found a couple of Facebook Groups on the subject and the App they recommended to get me started. A few days into the new direction a gal from one of the groups contacted me to clarify something: was I using the diet for weight loss or medical reasons? The grams of protein/carbohydrates/fats or “macros” are different with each type of ketogenic diet. For both programs a person consumes very little carb grams yet for weight loss you eat more protein than fat; for medical ketosis to occur you must focus on more fats than proteins. But it is in consuming very little carbs (I eventually got to 21 total grams) that the body is forced to utilize fats for energy instead of carbs. The body then produces ketones that can often be picked up in a simple urine stick test or special blood glucose meter that includes ketones. Ketones are hypothesized to stop or reduce seizures and may even help treat dementia in the elderly.

This week I reached ketosis. My breath got bad and another tell-tale symptom appeared that is too much for even the transparency of this blog post! It took me three weeks to get here and it could take a minimum of 2 months, usually 4-6 months, to see if the ketogenic diet will help me at all. I am willing to try. Heck, I already have a very restricted diet anyways. And who doesn’t like (uncured, unsmoked) bacon? The MyFitnessPal App is a gift from the Lord in managing this. I would recommend it and their Facebook to everyone on a diet where a person must track macros.

So how about the blessings in all of this? Surely there were some? Indeed Gentle Reader. You know me well! You see I researched the ketogenic diet two years ago and periodically thereafter but could not find a local neurologist or dietician to guide me. Close medical oversight including lab tests every three months are needed in addition to the periodic self-monitoring via urine or blood sticks. Help has arrived just at the right time. Briefly, check this out:

My first week venturing into the food plan, the gal who messaged me off Facebook just happened to be a retired nurse from the neurosurgery center at John Hopkins Hospital in Baltimore. She manages her own true epilepsy in part with this diet. Did you know that the only medical center in the USA with a dietary research and treatment center for adults with epilepsy is at John Hopkins? I knew that and was ecstatic to spend that first Saturday night receiving mentoring from my “guardian angel” named Vicki. Thank you Lord!

Around this same time I researched a foundation known to assist children with true epilepsy. Maybe they would have some new information? Oh yeah, a medical center close to our home in a smaller town had just hired a dietician to work with children and adults in all aspects of the ketogenic diet. She had recently attended a conference with the Charlie Foundation and was added to their list of practitioners the week before! She manages all of the referrals, orders for lab tests, and consultations. And Mary is very sweet to boot. Wow, Lord.

In many ways, in many long and exhaustingly arduous ways, this new treatment direction could be one more bunny trail in the quest to recover from this wretched illness. O.k. Poor me baby. Well then again, maybe not. Sometimes you have to do more than one task to completely recover from a serious illness. Remember the phrase, “recovery is a jagged line?” The Ann Landers column about life being about the journey and not the destination? The gratitude I feel in my heart for having met you Gentle Reader? All of the computer skills I have learned about everything from ecommerce to social media? The deepening of my relationship with Christ? The revelation of the Godly character of my beloved husband? And the fact that I did not die in all of those near-death experiences? On this day I must say that I have seen the faithfulness and blessing of the Lord at some level every single day of the past 3 1/2 years. His promises have seen me through and rung true every single day. I will leave you with my fav promise from another time in my life of refining fire (and a side of bacon too please, crispy as in nearly burnt. I like it that way!) Take care, JJ

Jeremiah 29 11, Jeremiah, hope and a future, hope, plans, trust in the Lord, Christian hope, encouragin scripture, faith, ketogenic diet, chronic ilness, Christain and disability, Hope Beyond, Julie Horney — Jeremiah 29:11

Missing you terribly

Published on April 14, 2015April 15, 2015 by Jesus is for the WoundedLeave a comment

There’s a Barbara Streisand song with lyrics that go something like this:

If we had the chance to do it all over again, tell me would we . . .

Could we . . .

The way we were.

It’s not that I would like to go back to my former self or anything like that. I have had chronic pain for most of my life and lived with pain inside my heart for longer than that. Many of my own mistakes were downright damaging. Still other experiences damaged me and it would take until very recently to be free of their dark spiritual underpinnings. The freedom I experience in today from the drama of yesterday’s trauma was worth the good and bad spent getting here. But there is one part I am not sure what to do with . . .

I was never really physically fit and virtually always held a critical eye toward my physique even when at my ideal body weight. All that did not seem to matter to the stream of the male persuasion that came my way, ever since I was twenty years old. (Not sure what they were waiting for before that!) I always rode my bike as a kid EVERYWHERE. I did not think of it as exercise at the time, just a means to get me to the home of a friend. Several times in college I tried running around the sidewalks of the sprawling campus. “Library Hill” was a killer! Maybe I should say that I ran on most paths except the 27 or so degree incline of Library Hill! Carrying a full load of books up and downhill to class or to study late into the evening at the library should have earned me an extra degree in something or another!

What I miss most is the innocence of moving without thinking about it. Every day lately brings stark reminders of the convulsions that have returned. Every day brings a new version of shaking that hurts my neck the most and leaves some version of a headache behind. Every day the hope of exercising for the enjoyment of it alludes me only because I cannot; I actually had grown to like high intensity workouts before I got sick 3 1/2 years ago. Even with chronic pain I worked out with weights, unloaded my truck bed filled with sod/dirt/mulch, and kayaked for a couple of hours each week. I loved being strong.

Today I miss being strong. The trauma of seizures and convulsions have taken their toll. The sickness after an episode usually lingers for hours, days. I never really know for sure when the next episode is coming although the bedtime and waking-up patterns have been fairly consistent throughout this ordeal. Somehow despite my weakness, I HAVE NOT GIVEN UP for more than a day. Yesterday Steve and I went for a walk with our pup, Elle though most of the time the walking is through the halls of our home or a medical facility . . . or this past Saturday’s date night to the grocery store. It’s something, eh?

O.K. so I am bummed out. I have missed writing and did not blog so as not to bum you out, Gentle Reader, in reporting that the surgery did not stop the episodes as I had hoped. There are tiny improvements and for these I am grateful. I think I’ll need a little longer to recover and clear the anesthesia completely out of my system. In desperation I went on a water fast for 24-hours last week. It was awful! Amazingly I did not have seizures until the 24th hour! I believe the Lord gave me the wisdom through it all to start a ketogenic diet so new research and a new direction began the next day.

A ketogenic diet is a high fat diet where the fat becomes fuel for the body instead of carbohydrates. The version for seizure control (generally used for children) is unlike the keto diet for weight loss in that fats are consumed more than protein “macros.” Grams of carbs are the tiniest portion of the three. The increase in ketones are measured in either the urine or blood and thought to be the mechanism that brings some level of seizure control in 25-50 percent of children. In children the diet begins after a 24-48 hour fast in a hospital. Hmmm. My great Physician led me here after my own fasting experience too. So with the MyFitnessPal nutrition app in-hand, I am moving towards the ideal ratios of fats, proteins, and carbohydrates. Good news: that means lots of bacon! And at least I am off the pureed diet now!

The way we were. Can it be that it was all so simple then? Or has time re-written every line? If we had the chance to do it all over again, tell me, would we? Could we?

Perhaps the real longing requires me to not look back at all. Then what is it Lord? Fill this emptiness, please. Ease this hurting. Thank you for new tracks to run on, so to speak. I still need you desperately to guide me. I realize that I may not be alone in this desire you know. Please comfort the Gentle Readers out there who need you too. JJ

Request for Personal Assistance

Published on November 16, 2014November 16, 2014 by Jesus is for the Wounded8 Comments

Dear Gentle Readers:

I am most blessed to be in touch with you through this wonderful world of blogging. Today I am asking for your help!

Last week I started some baby steps in a new treatment protocol (called a Pretox Treatment Protocol) for mercury toxicity. The program is based upon the brilliant work of Dr. Chris Shade and Quicksilver Scientific. I am exceedingly grateful that my family doctor attended a conference where Dr. Chris Shade had presented on mercury toxicity. Dr. Shade developed mercury speciation testing and specific treatment regimes to open elimination pathways in the body of inorganic- and methyl-mercury. I completed several lab tests including their Tri-Mercury test and their Blood Metals Test is now in process. After suffering nearly 3 hellish years with daily seizure attacks and numerous failed approaches, we finally have hope for complete recovery.

The only problem is that I am having difficulty tolerating the Pretox Treatment Protocol! No surprise there: I react to everything these days. So here is my request:

Would you kindly contact Quicksilver Scientific and ask for a special consultation for me with Dr. Chris Shade? The company is exceedingly busy with expansion and Dr. Shade’s speaking schedule so a little extra noise might be helpful. Here’s the link to their website and where you can leave a message with my name and email address ( be sure to convert to an email address the following with numbers instead of words and “yahoo.com”: psalmthree4eightonezero@yahoodotcom):

http://www.quicksilverscientific.com/about/contact-us

I made this video for Dr. Shade to illustrate exactly what mercury poisoning has brought into our lives over here and my dilemma:

My husband Steve and I are hopeful that I am going to get well! We are exceedingly grateful for prayers and support of everyone and look forward to the day when we can celebrate together all that the Lord has done in this season of our lives. He is good. All the time. He is good!

Thank you for your consideration.

Take care,

Just Julie

Perspiration, Inspiration, and a Some Exasperation

Published on July 9, 2014July 10, 2014 by Jesus is for the Wounded1 Comment

When I was going to college we used to say that many gals were there more to look for their “MRS” degrees than prepare for a career. Then when I went to graduate school we used to say that our Master’s thesis was 90% perspiration and 10% inspiration. And as life carried on, while grateful for my education and degrees, I realized that what I would accomplish in life had little to do with either. Who I became had more to do with what I was willing to endure in the refinement of my character as a believer in Jesus Christ than anything else . . .

Psalm 23 (NIV)

A psalm of David.

¹The Lord is my shepherd, I lack nothing.
²    He makes me lie down in green pastures,
he leads me beside quiet waters,
³    he refreshes my soul.
He guides me along the right paths
    for his name’s sake.
⁴Even though I walk
    through the darkest valley,
I will fear no evil,
    for you are with me;
your rod and your staff,
    they comfort me.

⁵You prepare a table before me
    in the presence of my enemies.
You anoint my head with oil;
    my cup overflows.
⁶Surely your goodness and love will follow me
    all the days of my life,
and I will dwell in the house of the Lord
    forever.

Yea for those who call Jesus Lord of their lives; ruler of their hearts; and the Way, the Truth and the Life we have so much goodness to see us through.  This was never more clear to me than earlier this evening.  Brace yourselves as this is not for the faint of heart.
Around 9:15 p.m. I was having one of the most wretched seizure attack episodes and spiritual battles since becoming sick 2 1/2 years ago.  Nothing in particular triggers these battles of late:  for the last month this has been my nightly rite of passage into the next day.  My screams of terror, violent writhing, head banging, and pleading for the Lord to deliver me continued non-stop for over an hour.  My beloved came near to check on me at a moment when my nerves were on edge like a dry ember along a raging fire.  I cried out in sudden frightfulness when surprised by his silhouette in the darkness.  Later he returned to check on me again, clarify what had happened, and continue to pray for deliverance from the hell that I was enduring.  I had a sense that more wretchedness was welling up inside me so he was willing to grab the camera and videotape the horrifying moment in time.  Then all was quiet.  I lain on the bed exasperated with exhaustion.  My voice was hoarse, my frame sore from the thrashing about.  I was fried yet awake at the same time.  Man did my neck and shoulders hurt!  (sigh)
It’s times like these I have to ask myself if I am even going to make it through the evening.  Sometimes I am not sure based upon what I am experiencing.  I have to push through the binding down as I am seizing to even breathe while holding a pillow around my head (to avoid injury).  What in the world causes this?  Sadly the worst was not over:  it just needed to take a new form.  The spiritual attacks ramped up next as Steve returned so I asked him to hold me tightly.  He prayed aloud, sang a few hymns, and made sure I was safe as I wrestled with the effects of the attacks.  The new seizures, vocalizations, gut-wrenching tears went on for another 30 minutes or so with a few breaks for us to catch our breath, thankfully.  And then the worst was over.  A few zips, tic attacks, and guttural utterances slipped through with some low level shaking that looked a lot like shivering.  The whole episode had started with shivering before it escalated into full body wrestling.  Good grief.
The rain started swiftly outside the bedroom window around midnight.  The rushing sound of the water hitting the glass sounded more like my truck going through a car wash than a summer downpour.  And then suddenly I felt a strong urge to go outside . . . into the rain.  I needed to get up out of bed to try to put some closure on all that we had endured in the past 2 hours.  Lying there could invite more aftershocks so I strained to get up.  Alas I needed cleansing from the darkness.
Now I know why I selected the new black-n-white header photo for this blog.  The picture shown above came into mind as I walked decisively outside and into the redeeming  waters from heaven.  Now I didn’t go crazy or anything with holy laughter or getting drenched by the chilly droplets pouring onto my weakened frame.  Just for a few moments I stepped into the night to feel the cool wetness and look up into the sky above.  Three times I retreated under the covered porch to warm myself slightly before stepping back out into the night.  It felt good!  My socks were getting really wet though so I removed them as I went back into the house on the way to a lovely warm shower.  A little giddiness slipped into my steps as I realized how many decades it had been since dabbling in a summer rainfall.  I thought of the girl in the black and white photo.  Yes, little one, I understand your smile completely.
Gentle Reader let’s be clear on one thing:  if there was a remedy for this illness of course I would take it in a heartbeat!  While these episodes provide rich fodder for spiritual lessons and blogging, I’m cool with someday writing about gardening instead!  Earlier today a root canal specialist doubted that there is any infection hidden in my gums causing systemic issues or chronic illness that would create waking seizures.  Hey, my upper left jaw has been sore for many years so it was worth a shot to have it ruled out.  Sure I’ll see an oral surgeon in a couple of weeks for a special scan just to make sure of things.  Looks like it might be another dead end to a “bunny trail.”  I guess I just need to wait on the Lord for a time until he leads me beside “waters” that will “quiet” the unrest in my central nervous system.  I’ll see my Lyme literate medical doctor on Friday for a status update.  We have so very much to discuss with the ER visit 2 weeks ago and recent worsening of symptoms.  The arduous process of managing my care thus continues.
And yet in the worst moment of this evening, the one where it’s as if Satan himself taunted me to give in to his schemes instead of trusting in my Jesus, a teeny tiny voice inside me uttered that I will continue to trust in the Lord regardless of the suffering.  Steve reminded me of how Job of the Old Testament questioned what was happening to him even as he waited on the Lord in horrible circumstances.  Then when God reminded Job who He is:  His mastery over all He created, His almighty power, omniscience, and omnipresence, Job fell to the ground despite his gaping wounds to submit in worship.  I wonder if he heard a tiny voice stir inside his spirit as well?  I am just so very grateful that this inner voice, the leading of the Holy Spirit within those of us who believe, remains no matter what the trials may bring.  I heard it today and His refreshing words comforted me like the healing rains outside my window.  Thank you Lord that You are here with me like You were with Job.  You are the same today as yesterday and worthy of our praise.  YES, I will trust in You!
So if you think you too are facing circumstances that create perspiration and exasperation I encourage you to hang on until the inspiration comes.  Specifically, Gentle Reader, I encourage you to hang on to the Shepherd who refreshes the soul and will bring comfort in due time.  We must remain vigilant in keeping our eyes fixed on the face of Jesus Christ lest the evil one gain a foothold in our hearts, our minds.  Put on your spiritual armor (Ephesians 6:10-17) with the holy scriptures and he will flee in the name of Jesus Christ.  I guarantee you that warm fellowship with the One who loves you more than anyone will minister to your needs completely.  Hang tough.  Greener pastures are coming soon!  JJ