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

 

 

Not just another day

In this moment I feel quite normal.  I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off.  You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .

How come the wretched¬†hellish experiences of mine have become a normal occurrence around here?¬† Here’s what I mean:

  • Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
  • Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that¬†wax and wane in effectiveness until they are simply useless or make me worse.
  • Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it¬†brings sadness every time and sometimes even triggers memories of every and any¬†bad situation I have ever endured.
  • My beloved’s rising to the cause of caregiving, from chores to feeding¬†or¬†assisting me to the toilet,¬†eventually helps me recover¬†just before he must either leave the house for work or retire for bed¬†with his own case of exhaustion.
  • Expenses beyond belief¬†take away tremendous resources intended for the future:¬† a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
  • Hope can appear on the horizon as I make temporary progress or we discover new¬†medical explanations¬†for my suffering only to have¬†that hope¬†dashed, crushed, and covered with new diagnoses, new complications.

Today was not just another day.¬† I cannot tell you the grief that I experience after losing¬†one more to continuous convulsive episodes.¬† This past weekend I missed the lovely snow softly falling outside¬†our bedroom window:¬† our first major snowfall in the Midwest.¬† I didn’t get to delight¬†in¬†watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow!¬† If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do¬†at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks.¬† Those episodes with respective recovery periods totaled¬†about 15 hours today alone.¬† Lord have mercy!

This is no where near normal.  Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy.  I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic.  One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday.  Somehow I did get some Christmas cards ready-to-go however!  Wow.  That is simply amazing.

Please forgive me that my tone is angry tonight.¬† I do not have words of encouragement, scripture¬†to bring¬†hope or any insight as to what the heck is going on with me.¬† There are new problems with which to contend.¬†¬†Tonight I am in survival mode.¬† It’s¬†3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning:¬† an expensive treatment of merit I seriously question.¬† Chronic Lyme disease?¬† Heavy metal toxicity?¬† Which one is it already?!¬† Maybe before I go to bed I will try to finish cleaning a¬†bathroom that I started 2 hours ago?¬† Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . .¬† At least my back is feeling some better though.¬† Hooray!

So here’s to Christmas cards getting together and less back pain.¬† I have a roof over my head and food in the frig to munch on shortly.¬† My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I¬†will join him in an¬†hour or so.¬†¬†Well¬†there ya go.¬† Some sweet signs of normalcy do exist after all amidst some sweet blessings too.

I just can’t stay upset very long with you listening Gentle Reader.¬† Thank you.¬† Here’s a cartoon for you.¬† You rock! ¬†JJ

bedbugs

The way it should be

We had planned to be in Texas¬†to see¬†my hubby’s family this week for Thanksgiving but it was not to be due to “the illness.”

I had hoped to get some cleaning, shopping, planning, and cooking done days ago but things did not turn out that way.¬† The cleaning got done at 3 o’clock Monday morning!

The special oatmeal dish that my hubby makes for me when I am recovering from seizures was to be off my special diet right now . . . until I had another episode rendering me too weak to consider anything else.

One afternoon my beloved was carrying me to the bathroom due to a neurological collapse episode and the next day we were working together after dark on winterizing our landscaping.

Alternate plans for a family gathering in Arkansas would have saved us a¬†significant amount¬†of driving but my In-laws decided not to¬†change their plans;¬†my hubby’s parents even chose not to add another¬†“leg” onto their California-to-Texas-and-back trip as we had hoped and discussed.

Lying in bed each day this past weekend was broken up by a few meals in the kitchen, barely recovered from intractable back pain that sent me to the emergency room this past Monday.

My LLMD decided to treat my back with his chiropractic finesse despite my visit lasting 15+ minutes beyond when his timer went off.  He never does that.  I benefitted tremendously.

The new antibiotics prescribed to treat a co-infection of (chronic) Lyme disease has had the effect of increasing my most noxious symptoms instead of alleviating them.  My private pay costs increased $45 each week instead of decreasing as my treatment days diminished from 3 to 2.

The compounding pharmacy is now able to make my prescribed mineral IV treatment after declining the ability to craft the prior prescription, saving us hundreds of dollars and incredible inconveniences travelling to a clinic 2-hours from home.  My home health nurse reports that the new plan meets the criteria of her agency so we can schedule the start of bi-monthly infusions within a couple of weeks.

Two home infusions were cancelled during the transition from one antibiotic to two but my home health nurse was off sick those days that I usually received treatment anyways.

I sent an expedited check to make a payment for the medical bills on my credit card by the due date but the credit union never received it.¬† Someone named “John” supposedly signed for it but it was never found.¬† They reimbursed me for both the check and the “stop payment” fee.

I could go on . . .

If there is anything that I have learned over these 5 years of illness is that things are never as they should be.¬† Well actually I knew that long before 2011 from my work with PEOPLE in healthcare.¬† Peeps are finicky, change their minds, let you down, show up late or not at all, get sick, get on board with the program eventually, give into emotions over reason, love you anyways,¬†or just plain old don’t care sometimes.¬† In the end it’s not about the individuals really.¬† It’s about where I am placing my trust.

A wise pastor (Bill Hybels of Willow Creek Community Church in Barrington, IL) once preached that we are to, “Trust God, Love People.”¬† Yes indeed.¬† Our ultimate hope for things turning out the way they should be should be in the person of Jesus Christ.¬† We are to love everyone else as unto the Lord.¬† Only He will never forsake us, never fail us, and deliver right on time every time.¬†

Alrighty then.¬† This rant is now over.¬† It is just before sunrise and my nurse will be here in a few hours to administer my care.¬† I seem past the bewitching hour of the nightly seizure attacks so I will probably try to get a nap of sorts.¬† Two bags of antibiotics tire me out so I would have needed a long nappy-poo/recovery period afterwards anyways.¬† I will trust that the Lord’s will will be served once again.¬† So before I stop making any sense at all, I will end here.

It’s probably the way it should be?¬† JJ

 

Slow but sure

Whenever my Dad’s mom was facing a setback in her health she had one phrase regarding her progress, “I am getting there, slow but sure.”¬† She might be in the hospital with an exceedingly painful case of shingles but her response was just the same.¬† Surely this attitude endeared many of the medical staff to care for her just a little more.¬† I sure appreciated her more when she reassured me with these words over the phone 300 miles away.

slow but sure, slowly but surely, senior crossing, traffic sign, grandma, grandmother, sign

I have decided to borrow this attitude for myself.  Perhaps it will help with another temporary setback as I recover from a recent biopsy of my thyroid.  My neck hurts!  The procedures and resulting discomfort have triggered more noxious symptoms including those related to hormone fluctuations:  temperature dysregulation, blood sugar swings, occasional tearfulness, etc.  But it had to be done:  my third round of biopsies over the years at least this time was performed under conscious sedation.  Gratefully I did not have to be awake when they pushed that very long needle into my neck.  Eeeeek!

My recovery is coming along, slow but sure.  Today I was able to be upright more hours than yesterday and hopefully I will be able to leave the house tomorrow for an appointment before my infusion of antibiotics in the afternoon.  The latter continue 3x per week as they will very likely for the total of a year of IV ceftriaxone.  We are trusting the Lord to provide for all of this; we have had to pay thousands per month ourselves for most of this year.  With treatment by a naturopath and genetic coach, compounded medications and supplements, and every kind of co-pay there is, we should qualify for a medical tax deduction for the year without any problem!

At least now I am not failing unto death any more.¬† What good would I be to anyone to allow my health to decline without a fight?¬† I believe the Lord gave me a brain, five years,¬†and an unusual provision of resources to get this job done so getter done I shall with my beloved Stevers leading the way.¬† Slowly but surely this train will reach the proverbial “Station*” just in time someday with a little less baggage for having fought the good fight.¬† And it looks like things may be looking up soon (provided the biopsy results indicate that the thyroid nodules are benign!).¬† Regardless:¬† God is good.¬† All the time.¬† God is good.

I hope that you know that to be true too, Gentle Reader.  Feel free to tell me about it below . . .

*https://justjuliewrites.com/2013/03/24/the-station-by-robert-j-hastings/

So much to consider

Phil 1:12, Philippians, trials, suffering, endurance, Christian, crisis, long term, illness, chronic, humor, gallows12¬†But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.”¬† Phil 1:12

Just as this picture and this scripture present two extremes of perspective for the activities of life, they are united in one theme:¬† we shall¬†rejoice¬†with Christ as our guide!¬† Yeah, I know that is a stretch . . .¬†but we do know¬†that the God of the universe¬†has a sense of humor too, right?¬† I mean he created aardvarks, zebras, and tse tse flies!¬† What’s up with that?¬† Oh I know that the Original Adam named them all but just how did he do that?¬† They were all such weird creatures!¬† So it follows then that humor can help us endure¬†many kinds of¬†extremes, even the ones you and I are facing today.

Take for another example the thieves that attempted to steal gasoline from an RV.  This is a true story:  instead of tapping off the gas line they ended up tapping off the septic line instead!  When the fluid started flowing it was not fuel it was the polar opposite:  stool!  So sad.  Such a righteous punishment I must admit!  And as a grateful owner of a travel trailer all I can say is:  Tee hee with a smirk.  ;}

I cannot say that I can relate to¬†the paradoxical themes of life with much right now with much lightness of spirit¬†right now, however.¬†¬†I’ll just keep it simple:¬† there’s some good and there’s some that is not.

On a good note I am grateful to report a widening of social contacts of late.¬† I’ve reached out to some old friends and some newer gals have jumped back into my world from my local church.¬† I appreciate the¬†friends that I’ve met online (and you know who you angels of mercy are) and hope we can extend our fellowship.¬† All of this is good.¬† It’s amazing how all believers in Jesus Christ¬†share a common¬†unity even when the circumstances of our lives can be so different.¬† We all have our daily wants and needs; our Lord cares for the desires of our hearts tenderly and for these we can pray in earnest for one another.

On a less good note, new I.V. antibiotic treatments for chronic Lyme disease are going quite roughly.  Yup, revisiting Lyme since the persistent seizure attacks sure look like the episodes of others dealing with the neurological complications that can happen long after the acute infection has come and gone.  It was 4 years ago that I first started treatment for Lyme when things got sidetracked for treatment of mold and mercury toxicity, dental issues, Candida, parasites, and a possible oxalate burden exacerbating fibromyalgia pain.  Use of a Rife machine brought daily seizure attack episodes and treatment of Candida escalated them from 2 to 5 hours of convulsive episodes per day!  I was bedridden the better part of about 4 days each week this past Spring, Summer, and Fall.  So beginning in January I was started on high doses of IV Rocephin (antibiotic) and I remain sickly but out of bed more of the time.  This treatment coupled with the wintry temperatures below freezing have brought incredible pain.  However, the days that I am up until daybreak every night of the week has cut down; tinnitus, brain fog, and other executive functioning skills are sloooooowly shifting for the good.  Sometimes even the pattern of convulsive episodes shift as well (thank you liposomal melatonin!).  Just maybe these past 4 years have not been wasted after all!  It appears that each new treatment has prepared me for such a time as this:  we just might be able to treat this remaining beastly diagnosis and its co-infections to get well . . .

There is so much to consider.  Will I continue on antibiotics long term?  Will my health insurances help us out or cut us off next week?  Will I be able to get a port to spare my aching skin and forearms from repeated pokes and dressings that trigger more wretched episodes?  When would I transition back to more herbal-with-pharm-grade supplemental interventions?  Will the reactivity to mold and fragrances ever come down or do I have to go live in a pristine environment somewhere for a few months later on to fully detox?  How much more stress can my beloved husband, Steve, be expected to bear?  And how will we pay for all of this?

As the frigid Winter temperatures of the Midwest bring more of a sense of retreat than charging forth into the unknown, we are choosing to press on¬†anyways with my treatment¬†for chronic Lyme disease.¬†¬†I just wear long underwear everyday to keep warm!¬† We are starting where we are with a local, Lyme-Literate Medical Doctor who has treated dozens and dozens of cases successfully.¬† I know that¬†to be true.¬† I have met¬†many of them when we had a local Lyme disease support group.¬† I noticed that each of us facing this dreadful disease had chosen a somewhat unique path to¬†his or her¬†recovery based upon the damage the infection¬†caused to our bodies and our individual resources.¬† (See this link for more info on chronic Lyme.)¬† Perhaps my case was one of the more severe.¬† Perhaps the Lord had more than “recovery” in mind when He allowed this serious illness into¬†my life.¬† There is so much to consider that simply was not on my radar over 4 years ago.

If you have found this blog by way of your own journey through chronic Lyme disease or some other serious illness, know that I am praying for you.  There is hope!  You are not alone, Gentle Reader.  Please comment below and allow me, if you like, to connect you with a larger community of those finding meaning beyond his or her diagnosis.  Our Lord, Jesus Christ, grieves for your suffering, your fear, your broken heartedness.  He sees you and will see you through what you are facing as He has done so for me and Steve.  He loves you more than anyone (including the furry pup above who has found his prize squirrel in the sunshine of a better day).

May we both smile some day in the arms of our Heavenly Father for having connected this day, for His glory.¬† And, um, when we get our prized prey I’ll just say, “please pass the catsup.”¬† Squirrel on the Bar-B-Que anyone?¬† Ewwwwww!¬† :JJ