Tag: neuro

Treatment Update and New Learning

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So they say that the brain is relatively “plastic” meaning that new associations can form within it over time, over the synapses between cells, even structures.  This can make a critical difference in the long term outcome of traumatic brain injury, seizures, stroke, toxicity, and disease processes affecting our central nervous system.  Thank goodness.  I might just make it out of this neurological illness with something good?

New associations can form in the brain via various mechanisms:  learning a new skill, subject of study, or behavior (such as breaking a habit and replacing it with another).  Utilizing memory can draw together old and new centers of the brain where information is stored.  Sensory stimulation from the five senses and movement also have an impact as each stimulates different centers in brain stem and cerebral cortex.  Movement increases blood flow to virtually all of the tissues of the body including the brain.  I understand that all of these activities but new learning in particular, can help slow down the onset of age-related dementia.  Never stop learning folks . . .

My own ability to learn new skills appears to be improving.  I have volunteered to help a  friend finish her website and continue to be the Assistant Editor of the quarterly Canoe News magazine of the United States Canoe Association.  Both require learning how to use software programs I had only heard of in the past; never used them in my occupational therapy career.  Cool beans.  Thank you Lord for these projects and my ability to tackle them!  When faced with a problem to solve, my attitude of late has been more of, “I’ll figure it out,” than anything else.  I like it!

And in general, the seizure attack episodes that I have suffered daily for 5 years are trending downward again.  Thank you Lord again!  My Doctors have transitioned my care from anti-bacterial (Lyme) to anti-viral medications and supplements.  We are re-testing several areas this month as well.  The biggest help overall appears to be the addition of 100% THC-free hemp oil.  This is a special kind of CBD oil made from industrial hemp NOT medical marijuana.  All of the cannabinoids except CBD are removed; not even the legal limit of .3% THC remains that is present in other CBD oil products.  (I wrote more about this here.)  It’s the only independently lab tested product of its kind that I could find in the United States.  Note that the CBD oil I am taking is  LEGAL in all 50 States!  I know.  I have been researching this issue for 4 years and have tried other CBD products available in my State.

My activity level has gone up some with pain coming down enough such that I can:  work on the 2 projects noted above, walk the dog 3 times per week, and leave the house for one non-medical activity per week.  So far, that is.  Looks like I might have had 2 outings in the past 6 days of this past week already!  I have started to be able to do my physical therapy exercises.  Thank you Jesus!  And when I got sidelined last night with noxious symptoms in the middle of the night, at least I had strategies to get me through a rough headache and morning today.  I’ve got tools to use now that actually help my symptoms.  This is a big deal to me.

Lord willing, Monday will bring an important imaging test in a large city about 3 1/2 hours from home by car.  My beloved hubby is taking me.  The test is a special MRI scan called an “MRI with NeuroQuant processing.”  The NeuroQuant software takes volumetric measurements of various brain structures and compares them to a normal brain.  Experts have identified parameters of significance in both the Lyme and Mold illness that provide diagnostic information and help in determining the severity of these respective illnesses.  This test is also used in traumatic brain injury, stroke, Parkinson’s, and Multiple Sclerosis care and more.  I am pursuing it due to headaches virtually every day in addition to the remaining convulsive episodes.  Several EEG and sleep studies have shown no negative findings.  My regular brain MRI a couple of years ago was normal.  Maybe the NeuroQuant will help rule out other causative factors?

So did ya learn anything new today Gentle Reader?  I sure did.  I learned that there still is a someone-or-two who cares about me and what I have to say.  Thank you for that dear one.

You rock!  JJ

It’s Legal: CBD Oil is Here to Stay

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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.

industrial, hemp, CBD, oil, seizures, convulsions, benefits, legal, legalize, Lyme, tremors, tics

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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Vampire Diaries 2

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hebrews, Hebrews 13:5, abandonment, promises of God, alone, loneliness, scripture, depression, sorrow, loss, illness, sickness, hope

Tears going up and down a lot this day

On the roller coaster of emotion I find myself on:

Help cometh x2 but test results won’t satisfy

As here I sit with my neck aching all through my brain.

I tried.  I really tried to figure it out and failed.

The symptoms that remain still taunt my peace

Leaving scars, leaving woes, leaving loss behind the hope

And yet my breath prevails so in and out I will also go today

To match the pull of the vampire’s teeth left in my chest wall.

The infusions continue instead of a long-desired break

The bank will love us less, the medical folk perhaps more

Whilst someone’s Mercedes payment will be made

And my saga continues on Big Box Store hamburger.

Hope always seems just one more day out there somewheres

Leaving me here beat up from this morning’s episode of torment

A snuggle with my husband got transformed into caregiving

And more hours were lost in the aftermath once again.

At least my dog seems to understand as she nudges her nose at the leash.  “Can’t we go now?” her soft brown eyes contend.

Relief might come in the mail soon

Or maybe not; it’s hard to tell

So I’ll keep calling on my Jesus for now

His calling card never leaves and never fails any of us anyways. JJ

 

 

The glove on the sidewalk

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In Christ there are no “coincidences,” just Divine touchstones:  those events orchestrated by the Lord for our good, for His glory.  Sometimes we get to see His hand and sometimes we don’t.  And other times things look too dark to come from our loving, sovereign, holy Father.  These can all be quite mysterious this side of heaven, eh?  Less so for me these days.  My faith has grown to trust the Lord in all things (even the ones I don’t understand).  Allow me to elaborate from my world of late.

I was walking into a medical appointment today and saw a glove lying on the sidewalk next to an adjacent garage.  I used a tissue to pick it up since it looked soiled then I noted that it looked quite familiar.  Yes, it was the glove I had “temporarily misplaced” last week!  But how could it have remained here in this sort of prominent place unnoticed for seven whole days?  Who knows?  Chances are that I dropped it off my lap onto the blacktop when I exited my vehicle and it simply blew over to the sidewalk inch by inch until it’s black silhouette was easier to see against the lighter-colored cement.  The staff person in the office helped me figure it out.  I was dumbfounded!

Similarly, I have found little God-moments in the arduous process of transitioning from IV infusions at an outpatient clinic to my home.  When you are forced into a private-pay healthcare service there is no one to assist you with navigating the 18 agencies, 6 pharmacy/supply companies, coordination of care, financial arrangements, medical orders, and “GO” button to make it all happen within a week of making the decision to do all of this.  Today was treatment day number 2!  Whew and thank you Lord!  I have been taking more naps since it all came together probably due to the stress of it all more than anything else.  There is still more to do but hey, no worries.  I’m on it!

Huber needle

The research the Lord empowered me to do has become another blessing.  First, the pharmacy I initially chose did not have the Safe Set Huber needle that would work better than what I had been sent to access my power port.  My nurse was able to quickly contact another provider on my list to have the one pictured above and some other supplies sent to my home in time for treatment #3.  No problemmo, the pharmacist essentially personally texted me from her home late Friday afternoon.  Now that’s service!

home, infusions, IV, treatment, Rocephin, ceftriaxone, home care, home health, nursing, port, power port, hospital, treatement, Lyme, disease, chronic
My new treatment space!

In another example, it looked like renting 2 infusion pumps would add a lot of expense and complexity to the home care until a “mistake” happened during one of my last treatments at the outpatient clinic.  The lab mixed the reconstituted antibiotic with the 500 cc of normal saline instead of dispensing them separately.  This would change the dosing that we had landed on to prevent seizure attacks during the hour-long infusions.  As it turns out, I tolerated the combined treatments just fine.  So there would be no need for the rental of 2 pumps, no extra expense, and not even a need for expensive, pre-filled “ball” or elastomeric pumps.  I ordered an IV pole ($20) and the meds pre-mixed into the bag of fluids instead.  Cool beans.  But all this still does not mean that I want to become a nurse ya know!

The Lord is in the details of our lives, Gentle Reader.  He knows them, He sees them, He cares about them, He grieves them, He loves over them and us too.  Just when we think that God is nowhere to be found, we need to look a little more closely at the small stuff.  We need to move the space from “God is nowhere” to “God is now here.”  He never leaves us or forsakes us (Hebrews 13:5, Deuteronomy 31:6) even in the midst of trials.  The trials may be the very place when we may see Him the best.  Take a look this week and be sure to tell me about it, k?  JJ

Psalm 139.17.18

 

 

Symptoms and more: May is Lyme disease awareness month!

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Enjoy the sweetness and reality of warmer weather throughout the United States and beyond from fellow blogger and friend, Sherri!  Looky here for more on this subject.  JJ

Each spring brings a new awareness to life. As my body adjusts to the weather and becomes more alive without pain, I enjoy hearing the birds sing as they do their morning chores. Of course, I sit with a cup of tea these days on the chaise lounge brought home from our cottage and listen…

via Spring? Is it here? — A Labour of Love