seizures – Page 20 – Jesus is for the Wounded

Treatment Update

Published on November 10, 2016November 10, 2016 by Jesus is for the WoundedLeave a comment

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It’s time for a yearly brain dump, hopefully keeping my heart in the right place (2 Corinthians 4:20) as I do so!

The last Treatment Update was quite bleak and posted when bedridden most days of the week. I am grateful to report that it is no longer true! As I described briefly in the About Julie page accessed in the side bar of this website, in January of 2016 I did proceed with the treatment of neuro-Lyme disease with 3x/weekly IV infusions of Rocephin (aka ceftriaxone), initially administered daily for 2 weeks. Insurance stopped paying for the treatment after the first 28 days so I quickly transitioned to home infusions via a home health agency. My time has been consumed managing the medications, supplies, scheduling, set-up/laundry tasks, and more required in having these and other treatments right here in our living room. I also started full spectrum infrared sauna treatments 1-2 times per week. The ongoing expense is tremendous and frankly has depleted most of our available resources.

But has it helped? Yes: I am doing better than I noted on November 11, 2015. Except for a recent increase in symptoms (suggesting treatment resistance and a need for a change in medications), I am no longer having convulsive episodes 2 to 5 hours per day with one day exceeding 12 hours about every 2 weeks. I am no longer bedridden most days of the week. Most weeks I can get out for essential errands such as grocery shopping and gratefully I was able to paddle our outrigger canoe or more stable kayak 5 times this past year. I praise the Lord for this progress! My reactivity to noxious stimuli and mold has diminished about 30% allowing me to participate in a social function about one time per month without a marked increase in symptoms. I attribute a good part of this progress to my work with brilliant naturopathic physician and genetic coach, Dr. John Catanzaro, of Health Coach 7. There is more work to do however. Progress remains slow.

After much struggle, prayer, and perhaps a leading of the Holy Spirit, I consulted with my Lyme Literate Medical Doctor (LLMD) earlier this week regarding a change in my treatment plan. He has decided to change my medication to a combination of IV Rocephin/Zithromycin regime for Bartonella: a co-infection that often accompanies borrelia burgdorferi (which is the primary bacteria of Lyme disease). Bartonella is often associated with seizures, peripheral neuropathy and some lesser symptoms that are a part of my clinical picture. Oral antibiotics of minocycline and Plaquenil may follow; it is common to use multiple antibiotics currently for Lyme disease when chronic with neurological complications. There are ongoing supplements for treating biofilms (ie. the mucous membranes in which the organisms hide), detoxification, and nutritional goals as well. The new treatment plan begins tomorrow . . .

I am required to have the first dose of the new medication administered in a medical facility before it can be administered by my infusion nurse in home health care. So tomorrow I will re-visit the outpatient clinic of our local hospital where this phase of treatment began earlier. I have come a long way since then!

Starting an IV or accessing my power port used to trigger up to 20 minutes of violent convulsive episodes every single time! Sometimes I had to be accessed in more than one peripheral site due to the collapsing of my veins, hitting the valve of a blood vessel, or the pain/severity of the procedure. The started isolating me in a private room due to the concurrent involuntary screaming episodes! That is no longer the case. Also, the entire infusion appointment used to require me to be at the hospital up to SIX HOURS before I was stable enough to walk out the door. The nurses in the outpatient clinic left at 5:00 p.m. so they would transition my care to the staff who worked until 8:00 p.m. so I could sit alone in the quiet, deserted treatment rooms until the post-treatment episodes resolved. Again, this is no longer as severe. I do miss watching the remodeling shows on HGTV during the treatments, however. We don’t have cable TV at home!

The journey has been long and difficult: October 11th marked 5 years since I got sick with viral hepatitis after kayaking in the Cedarville Reservoir near our home and November 20th marks 5 years since the first seizure attack episode. I have cried many grievous tears for so many different experiences of loss and incredible suffering. There have been 3 minor surgeries with only 1-2 days of pain medication each time; the number of convulsive episodes is in the thousands. I have now had counseling to cope with the trauma of this extended illness and to prepare me for the day when I will recover, return to life. By the grace of God I have been able to complete the continuing education credits needed to keep my occupational therapy license active although I have not been able to work since February of 2012. My husband and I have faced unbelievable stress, the depths of heartache together. And even so, we are hopeful that someday I will recover fully.

Our Lord, Jesus Christ, has stated that those who believe in Him will have strife in this world but to not lose heart: He has overcome the world (John 16:33). He has been the strength that both Steve and I have needed to endure and overcome the worst hours of torment (Psalm 73:26). He sent His son so that we would not die in our sins of the consequences of living in a sinful, fallen world but have everlasting life (John 3:36).

This means that my life will go on beyond these struggles, this suffering that I have endured and one day be with Him without the tears of this whole ordeal (Revelation 21:4). That special kind of joy and peace shining in my heart even now will blossom into all joy and dancing as I trust in my Lord and Savior through it all (Deuteronomy 31:8). I have cried out to Him on my bed of sickness (Psalm 41:3) and He has led me by His Holy Spirit time and time again (Mark 13:11) as He did the disciples before there time of unimaginable persecution. My suffering, our suffering pales in comparison to that which persecuted Christians endure every day for their faith.

Thank you Lord for helping me and Steve to endure this illness. We are encouraged for my progress and sense that it has not been wasted: I raise this testimony up to you that Your glory may be revealed in our lives. (Romans 8:18) To You alone be the glory. Please bless the Gentle Reader reading this today. Thank you for loving us and bringing us together (1 Corinthians 5:4). In the name of Jesus Christ I pray. Amen.

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I miss you

Published on November 1, 2016November 1, 2016 by Jesus is for the WoundedLeave a comment

A Letter to My Former Self:

I miss you dear one:

Your silliness, creativity, spontaneity, occasional complaints.

You have left me here quite empty

With shards of who you once were hanging in a forgotten frame.

If only she would come back

All things would be right again with the world, no?

Yeah that is a definite nada

Since we can never retrace the exact steps that brought us here anyways.

“So what to do with my longing?” I ask.

That’s a tough question barely understanding the answer that has come,

For we will not be happy back there

This foolery we must shed to fully be present in the “now.”

For Christ alone provides the joy within

Not circumstances nor that driven by the shallowness of this life.

Better to place one’s heart in the Lord’s hands today

And consider the blessings that would have been missed had we gone another way.

I cannot get back what has been lost all these years

Better for me not to miss the opportunity before me this very hour,

Than to have myself facing the wrong way when my Savior comes to take me home. JJ

ephesians 5, 5.17, ephesians, Lord, will, my life, let go, let God

It’s Legal: CBD Oil is Here to Stay

Published on October 2, 2016October 3, 2016 by Jesus is for the Wounded1 Comment

A couple of years ago, I ordered my first bottle of CBD oil from Bluebird Botanicals. My hope is that it would take away the seizure attacks that I experienced on a daily basis as part of a serious and complex illness. The preliminary research showed that CBD oil made from industrial hemp would be legal for me to purchase in Indiana, was effective for intractable seizure disorders affecting children, and would bear few if any side effects.

I tried it. I slowly increased my dose over the next 3 weeks to the level indicated in the testimonies and research that I had found online. Then things went terribly wrong. I started to have frightful nightmares. They increased in vividness and horror then were joined by waking night terrors. These are the kind that don’t stop when you wake up! I was scared to continue. I backed down my dose, took a break, re-started and nothing seemed to bring relief. The benefits of halting or preventing seizure attacks did not outweigh these horrible side effects. Eventually I abandoned CBD oil altogether.

While medical marijuana has Cannabidiol (CBD) as an ingredient, you don’t need to live in a State where medical marijuana is legal to obtain CBD oil by itself. Medical marijuana also contains THC which is a schedule 1 controlled substance in the United States. CBD oil from industrial hemp only contains .3% THC. This allows sale of pure CBD oil in all 50 States. For me the .3% was still too much. I would later understand that I don’t even have a genetic disposition in my opiate receptors to explain my hypersensitivity to THC. Heck, I smoked pot occasionally as a young adult without any ill effects. There would simply be no explanation for my intolerance of legal CBD oil from industrial hemp.

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Flash forward 3 years. I became acquainted with a company who manufactured pharmaceutical grade liposomal products. When they introduced a CBD oil product made from industrial hemp, I decided to try it again. I still suffered from daily convulsive episodes although the number of hours lost per day to them had decreased after beginning IV antibiotics for chronic Lyme disease. Seizures, tics of organic origin, non-epileptic seizures (or whatever you want to call them) were a definite neurological complication of latent Lyme disease. The episodes were less per day but not gone. I ordered a bottle.

I did not get past a single dose of the new product before suffering another waking night terror incident. Dang! The only difference this time was that the superior liposomal nanoparticle size delivered the CBD more quickly to my brain than the Bluebird Botanicals product — and for me that was not good. I returned the bottle to the healthcare professional from whom I had ordered it. And then I waited. There would be no other compelling rescue remedies to reduce my suffering when the nightly episodes came. No doctor would order medication for me to even try; I have been to the Emergency Room 10 times over these past 4 1/2 years because of wretched convulsions! Even over-the-counter Benedryl would leave me unable to function very well the next day if it did stop them (and render me too sleepy to care about anything the next day). A few herbal antibacterial supplements offered temporary relief on occasion and the reason for that will be another blog post about Small Intestinal Bacterial Overgrowth (SIBO). Neurotransmitters and hormones that can give rise to seizures are manufactured in the gut dontcha know . . .

I learned that one of the better manufacturers of CBD oil was preparing to introduce a THC-free CBD oil so I contacted the owner. I leveraged everything and asked to try a beta version of their new product. Within 2 weeks the bottle arrived in the mail. It took around 15 drops to get a significant response: their THC-free CBD oil definitely helped reduce the intensity and duration of the nightly seizure attacks. Yeah God! This benefit happened even when herxing (or reacting) to a new antibiotic used in the treatment of SIBO. Some relief came at last! I am optimistic for the benefits that I might receive when the first round of antibiotics for the treatment of SIBO are completed in 5 more days. Perhaps healing my gut will help everything as well. In the meantime I have contacted the owner again to see if I might obtain additional product; my hope is to transition from using it as a rescue remedy to having enough for regular dosing that can help prevent the episodes altogether. I may need to switch brands to get this accomplished. We’ll see.

CBD oil is legal for purchase in all 50 States of the USA. If you are frustrated with noxious symptoms especially tics, seizures, pain, depression, or anxiety, there may be hope in the use of CBD oil from industrial hemp. Please do significant research on the track record of the manufacturer, look for independent lab testing of purity/potentency/concentration of active ingredients and absence of unnecessary fillers before making your purchase, especially if online. Very likely you will not find a superior product at your local health food store as hemp seeds and hemp oil contain too low a concentration of CBD to make much difference for a serious health condition. Here is one brand that is available only from healthcare practitioners nation-wide: Colorado Hemp Oil. And this website has some good general information although note that it used to be funded by a manufacturer of industrial hemp products: Project CBD. I am not sure of its current status.

This is my story and I’m sticking to it! I am not an expert by any means just a gal trying to find some relief in an ethical, legal, and medically sound manner. Feel free to share pertinent information below. Please don’t try to sell me anything!

Take care, JJ

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The Medicine Cabinet

Published on October 2, 2016October 2, 2016 by Jesus is for the WoundedLeave a comment

Pray tell how much do you think I can hold

In my shelves bursting forth from the orders?

“Try this, take that, or Google the one I heard about”

Becomes license for judgement once thought to be clinical.

Not learned in school but that of “hard knocks”

The ideas flow too simply during paid consultations

Such is the life of a lab rat in the cauldron of illness

Where test results get mixed with expensive remedies.

So I look up interactions online thanks to drugs.com

Although many will be borne out of a bad trip on a Tuesday

When I try your best guess out of desperation, my last dime

And occasionally find relief or find hope a fraction of the time.

“I’ll take it,” I say under my breath as a new protocol prints out

My medicine chest overfloweth, my fingers sore from researching

Til someday the Lord crafts a breakthrough I shall not give up:

For the Great Physician love me more than this infirmity for sure.

Just look up, look out Gentle Reader if you suffer along too

Have I not commanded you? Be strong and courageous.

Do not be afraid; do not be discouraged,

for the LORD your God will be with you wherever you go.

Proverbs,4:22, medicine cabinet, God's word, Bible, the word medicine, hope, healing, Great Physician

Vampire Diaries 5

Published on September 11, 2016March 29, 2017 by Jesus is for the WoundedLeave a comment

The night cometh calmly then burst into flames

Carrying violence within my fame rather than that intended for rest

Sleep yet so elusive: its nemesis pushes through the darkness

Leaving me quite empty, without a trace from where it came, no rhyme or reason to blame.

How can I go on? Asks the Benadryl box to the other remedy he found;

When will she learn to give in or give up and let the beast win whether or not I am around?

The behemoth within begs as if breathing a hell all its own into my frame

Taunting perhaps by demons, images more frightening than a horror flick not ever seen.

“None of that matters oh sweet one writhing in My care

This season shall pass, I assure you, if you but hold on one more day

For all you have is this breath and this scene set before you but

Be wise tender child for your torment shall not go unrewarded in due time.”

“But when? But why? Have I not earned a better place in your heart?

Have I not earned the way home sans suffering? Is it not yet enough?”

I have no answers for you just one request my chosen child full of grace:

That you trust me beyond anything you can imagine for infinity is where I am.

I love you most in the silence, the seizing of your heart really being remade anew,

The breaths that I hold rather than you, the nightmares that will become beautiful, I promise.

And then He spoke no more. No more salve for my breaking outer shell

I was left more alone than one can ever feel: seeing nothing ahead but His light up ahead.

Get up and start to move was all I could do with an emptiness burdening my mind

There would be no relief this night in the realm of the world around me, all that which is seen.

The relief came in my heart as I chose to yet still believe

That my Lord still loves me and always has no matter what it seems.

The refining fire has sent grief, with tears actually covering me from being consumed

So that one day I will know all the answers that I seek, when all is revealed.

Until then, Gentle Reader, these Vampire Diaries shall end

No need to rehash the trauma in a new form for don’t you “get it” by now

Or do you? Do you see that suffering is not the place we should ultimately land

For it is in our hearts, in our spirits that we shall one day live in a world without end.