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

 

 

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