Treatment Update

Time for a treatment update and some good news!¬† Yes, things aren’t as bad.¬† ūüôā

My major focus with my health since I started this blog has always been to stop the residual, daily convulsive episodes that have plagued me for over 5 years.  More recently my treatment plan has centered around treating a gut infection that appears to be related.  Some call it Small Intestinal Bacterial Overgrowth (SIBO) and specifically for me it might be due to a clostridia species infection.  Regardless, the gut-brain connection is real and affects neurotransmitters in the brain.  A myriad of neurological issues can result when these chemicals are deficient or out of balance.  Specific medications and nutritional supports directed by a functional medicine doctor in the past nor my genetic coach/naturopathic physician more recently seemed promising but did not help.  Over the past 5 1/2 years, my medical doctor and I have also addressed or ruled out a plethora of other avenues (biotoxin illness, Lyme disease, mercury and lead toxicity, nutritional deficiencies, dental factors, epigenetic expression, pain/structural complications, the endocannibinoid system with CBD oil, psychological issues, ruling out brain or cardiac anomalies, sleep issues, etc.).  But what about the dull ache in my tummy?

SIBO, small, intestinal, bacterial, overgrowth, abdominal, pain, tummy, stomach, appendicitis, clostridia, infection, test, OAT

I did an experiment with a hand held far infrared (FIR) device designed to treat pain.  I used to sell the KenkoWave when I was an Independent Wellness Consultant for a Japanese health technologies company called NIKKEN.  Pain in the right lower quadrant of my abdomen has persisted for over a year.  A comprehensive medical workup yielded no clues so I decided to shine the FIR light onto my tummy.  After just 2 minutes, I had a 2-hour, violent, non-stop convulsive episode that would not respond to any remedy we tried!  I hung on for dear life!  I experimented some more the next couple of days with the same result:  an hour of non-stop episodes after only 60 seconds!  Holy cow!  Maybe the cause is in there somewhere?  By this time I had gotten the results for the THIRD SIBO test coupled with an Organic Acids Test (from Genova Diagnostics and Great Plains Laboratories, respectively) with severe and high markers respectively.  Over the next month, a plan of attack came together.

Somehow treating SIBO last year with an antibiotic (that stays in the gut called Xifaxan) was not enough to solve the problem.  The current round began with about a week of a powerful bio-botanical followed by a nasty antibiotic called Flagyl or Metronidazole.  The drug makes me nauseous so I take another pill for that.  I am not fond of drugs but at this point I will do it if it KILLS THE BEAST!!!  Gratefully, the abdominal pain has already come down.  This leads me to the good news:

  • One-point reduction in the 1-10 pain scale.
  • Less reactivity to noxious stimuli and pain that used to trigger seizure attacks.
  • Shorter episodes that are generally less violent.
  • One less episode¬†most¬†days at my most vulnerable times:¬† falling asleep or waking up.
  • Clearer thinking for some part of more¬†days.
  • Less stress, fear,¬†sadness, and anxiety.
  • Fewer headaches.
  • Less food sensitivities slightly expanding my food choices.
  • Increased ability to tolerate¬†more supplements¬†prescribed by my¬†doctors per my test results.
  • Ability to work in the garden about once per week.
  • Ability to get to bed before midnight up to 3 nights per week.¬† (I often stay up late to avoid seizure attacks falling asleep.¬† Sometimes¬†this has helped in the past.)
  • Movement in a better direction on several laboratory test and scan results.

The changes also appear to have been impacted positively by taking Low Dose Naltrexone.  Persons with autoimmunity diseases and fibromyalgia often use it to reduce a variety of symptoms.  I did not do well on a different dose in the past but I believe the Lord led me to do some research and prompt me to try it again at a lower dose.  This started the list of improvements noted above with the reduction in chronic muscle and joint pain.  Praise the Lord!  Treating the gut infection followed and here we are.

I am encouraged and hope you are as well, Gentle Reader.  Lord willing, I am going to get well!

If you are someone reading this who is struggling with severe illness, please let me know so I may pray for you.¬† And please don’t give up!¬† If I can make it through hours per day of head-banging, you can make it through what you are dealing with too.¬† You are not alone.¬† Keep trusting in the Lord to see you through each moment, to guide you and comfort you as only He can do so.¬† He promises to never leave us or forsake us and will always be near if we but call upon our Lord and Savior, Jesus Christ.¬† He sees us on our bed of sickness.¬† He hears us.¬† And one day He will come again in glory for us, taking us to a place where there will be no more suffering or weeping.¬† He promised!

Thank you for following my journey dear one.  Take care, JJ

 

 

Dealing with the trauma of illness

Not that I have a total handle on this topic or anything but hey, I have learned a few things worth sharing . . .

Every day for over 5 years I have suffered waking seizure attack episodes¬†of varying duration and intensity.¬† For over a year (ending last year) they averaged 2 to 5 hours per day!¬† At least once per month they would spike up to 12 hours on and off in a single day, sometimes requiring an Emergency Room intervention.¬† I have been to 3 different emergency rooms a total of¬†FIFTEEN TIMES including¬†once by ambulance.¬†¬†After nearly a year of IV antibiotics for chronic Lyme disease these episodes are generally less than an hour per day now with some positive changes in triggers and patterning.¬† Significant testing and other treatments, research, and patient “networking” remain¬†my primary occupation.¬† I am grateful for the improvements that have come¬†including overall¬†less pain from the repeated physical trauma of “head-banging” and wretched writhing movements (thanks¬†to¬† periodic¬†intervals of¬†physical therapy and periodic chiropractic adjustments).

The journey is hell at times.¬† At my worst times I have questioned if I could endure this level of suffering one more moment.¬† My breathing has stopped numerous times and there has been one significant near-death experience with visions of “white lights.”¬† I have had to pray many times for the Lord to give me the strength¬†to get to the bathroom when alone during hours of convulsive episodes.¬† Every type of healthcare provider I have ever seen and most close friends and family¬†has witnessed them.¬† My husband is a saint, having cared for me often late into the night then getting up and going to work the next day.¬†¬†¬†A total of probably a hundred times he has had to carry me across our home when I could not walk, feed me, take me to the bathroom, assist me with bathing, take me to the emergency room, run urgent errands, and the like as my primary caregiver.¬†¬†Probably a thousand times he has volunteered to bring me some type of “rescue remedy” to attempt to get the seizures to stop (generally at night or upon waking in the morning).¬† He never complains.¬† He is my hero for sure.

In other blogs you will read about all the avenues we have pursued to try and get me well:  chronic Lyme disease, heavy metal detox, mold remediation, obscure infections, dietary restrictions, neurology workups, dental issues, nutritional deficiencies, epigenetic testing and coaching, electrosmog, gut issues, yada, yada, yada.  I spend hours per week researching, managing my healthcare, dealing with extreme mold avoidance and other preventative strategies, and accessing my support system online or by phone.  Church worship is also online to minimize triggers from environmental stimuli, however this strategy also increases my social isolation.  Trips away from home are generally focused on essentials during my best times of day and occasionally with transportation help from a couple of sweet gals from church.  I wear a mask in their cars and sit on a towel covering the passenger seat but we find a way to connect anyways during those trips when help is needed about once per month.

As you can see, there is much abby-normal stuff during¬†my days.¬† Social isolation and the ongoing seizure attacks are my biggest heartaches.¬† The latter causes both physical and emotional trauma when they are severe which still happens two of the seven days per week still marked by ongoing episodes.¬† The two this week included: ¬†1) a violent reaction to an ingredient in an new injected medication¬†that I need to treat osteoporosis and 2) a new¬†strategy to treat severe Small Intestinal Bacterial Overgrowth.¬† Both of these conditions very likely are complications of ongoing illness as they were not present before¬†I¬†got sick on October 11, 2011.¬† Each¬†new diagnosis will bring¬†its¬†own special kind of discouragement if I don’t keep my worries in check with my hopes placed in the¬†redemption promised with belief in¬†Jesus Christ.¬† Already I mentioned a few of the strategies¬†I use for managing the social isolation.¬† What about the trauma?

I manage the trauma of severe, ongoing illness by trusting in my Lord and Savior, Jesus Christ.  This used to mean that I trusted in the promise of Jeremiah 29:11:

11¬†For I know the plans I have for you,‚ÄĚ declares the Lord, ‚Äúplans to prosper you and not to harm you, plans to give you hope and a future.¬† (NIV)

Surely if there is a purpose for all of this suffering then it won’t be wasted.¬†¬†It becomes¬†part of a greater plan, encouraging me enough to¬†endure even the worst¬†of the pain and¬†anguish I am enduring.¬† This viewpoint has helped me cope during¬†the first¬†5 1/2¬†years of this illness.¬† It carried me through the¬†decisions to¬†spend the rest of some savings with the hope of a cure and to endure the side effects of such treatments.¬† I can look back and point to the skills and information that I have learned, write about them here, take to heart the remarks of others encouraged by my stories, and note the Divine sequencing of many things that have happened along the way.¬† The Lord has provided so much for my care that gratitude has replaced temporary doubts, frustration, discouragement, intractable pain, and so on.¬† Seeing¬†some meaning in what¬†I¬†am¬†going through or shortly thereafter,¬†gave¬†both me and Steve¬†enough hope to keep moving forward no matter what the “cost” may be.¬† But what about when the process stopped?¬† The money ran out.¬†¬†I¬†am¬†not recovered.¬† There was no where else to go this past Winter when¬†I got to the bitter end of¬†my proverbial rope with worse symptoms than¬†I could ever imagine!¬† Yeah, that was the onset of facial shingles in December.¬† More hell and a hospitalization too.

That’s when I needed to learn to trust whether there would be a purpose I could see or if there would be¬†no purpose or direction at all.¬† I discovered that¬†complete trust in our¬†Heavenly Father builds faith and the strength to carry¬†each of us¬†through ANYTHING and EVERYTHING.¬† It’s a supernatural gift bestowed upon¬†believers in God Almighty who trust Him.¬† For those of us chosen to travel a path of excruciating suffering, we must find our way to this level of trust in the Lord our God.¬† Our faith will grow as a result and both will carry us through the dark times no matter how dark they become.¬† Did I tell you that frightful demonic attacks have come during the worst of the waking seizures?¬† Yes.¬† It’s more¬†terrifying than I can describe but may try to do so another time.¬†¬† At those times only the spiritual armor of God (see Ephesians 6:10-18) and this reassurance spoken by the apostle Paul will quiet my spirit.¬† God is greater than any threat in this world, in my world, period.

2 Timothy 1:7  (NKJV)

7 For God has not given us a spirit of fear, but of power and of love and of a sound mind.

Because what is my worst fear anyways?¬† Dying?¬† For me it is probably not dying but suffering even more with dying as the end result.¬† So finding peace when dealing with the trauma of physical and mental suffering must be accompanied by the reminders of Who overcame death, in Whom have I placed my trust, and in Whom will I find victory over my fears.¬† To extinguish the fearful thoughts I must again turn to the “sword of¬†the Spirit”¬†as described in Ephesians 6:17¬†as the word of God.¬† In the Book of John¬†we find Jesus comforting a¬†grieving friend when:

John 11:25-26 (NIV)

25¬†Jesus said to her, ‚ÄúI am the resurrection and the life. The one who believes in me will live, even though they die; 26¬†and whoever lives by believing in me will never die. Do you believe this?‚ÄĚ

Not only did Jesus overcome the grave when He rose from the dead on Resurrection Sunday (Easter), He gave those who believe in Him the promise of a glorious eternal life in His presence where there will be no more weeping, no more sorrows.  There will be rewards for the faithful too.  There will be perfect peace, love, and joy forever.

the cross

I may never see healing this side of heaven.¬† I may see healing this side of heaven.¬† I really have no idea which one it will be or when it will happen.¬† In the meantime I will simply trust in Jesus Christ who knows my name and sees my suffering (Psalm139) and ordains it somehow for good.¬† He¬†will¬†be here with¬†me always.¬† I ain’t dead yet so¬†I¬†trust that He will add His grace and power to see me through to my last breath.¬† Until then Gentle Reader I ask you,

Do you believe this too?

Treatment Update and New Learning

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

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

 

 

 

Vampire Diaries 2

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