Treatment Update

OC, OC2, outrigger canoe, tandem, kayak, canoe, 2 man, Hawaiin, boat, Huki, canoeing, kayaking, together, marriage, paddling

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.

Romans, 15.13, hope, encouragement, joy, peace, scripture, blog, overcomer, endurance, power of the Holy Spirit, Holy Spirit

Vampire Diaries 1

The slew runneth through my veins

Three times per week, no less

Mixed with this concoction, drug, or natural element

Sigh . . . I hardly get a break ya know.

Mr. Herx visits more often now

Not a friend nor enemy per se

He just stays and goes to torment at will

Hi torn and tattered calling card left with me.

The blood letting continues in test tubes of hope

For finding the answer, the cause:

Is it toxo, tuli, or tricho in cahoots with Lyme

Or a known co-conspirator that eludes capture?

Maybe in another lifetime or appointment next month

Will I find more to Google in this Hide-n-Go-Seek

Followed by a witches brew so dastardly I seize

Within seconds of pounding it down in faith perhaps displaced.

Aye, is not therein the rub or the salve to quiet my soul?

My Lord sees it all and stands nearby knowing the time,

The place, the reason, the meaning, the end

And will show me what I need to know and when

It says so in His Word:  better written than a vampire diary ever could.

So reject that a proclaimed healer bearing a wooden cross

Will know more than the Spirit of assurance in which I rest

Who will answer these questions, not you nor I.

My vessel may not go on or somehow come into its needed repair

But my being shall live on as it should in Christ

With a testimony, Lord willing, to bring glory to Him Who made it so.

Yes, therein I shall rest.  He holds my tears filling the river of life

And turns beauty from ashes in the dawn of the coming day

For “hope beyond’ as this blog will continue to attest.  Come along with me Gentle Reader.

The day of His return and our restoration is coming soon.  There is hope!  JJ


Psalm 41.3

It’s just not my turn that’s all

Another day slipped into history as I pondered the gratitude I felt for a recent task accomplished.  It’s no matter that the wrapping of Christmas presents got done from about 2 to 6 in the morning on Saturday.  That’s just how I roll these days . . .

Social media is one of the ways that I employ to counter the tremendous isolation I experience while overcoming a serious illness.  I used to be shy about it.  Many folks write about their need for a sabbatical occasionally when Facebook and the like become too big of a time eraser.  My life is structured differently I guess . . .

My brother, Michael, often talked about the support he felt from fellow poker players online.  Really?  How can you experience anything valuable from an anonymous side chat in a gambling venue of penny poker through the internet?  Flash forward ten years.  Now I get it.  Mike was home all of the time caring for our mother who was struggling with lung cancer, chemotherapy, and alcoholism.  The things that he endured were very difficult.  He would say that he never knew what he would find when he returned home from running out to the store or anywhere at all, making it difficult to get things done.  Those little touch points with his fellow poker players gave him the assurance he needed to do what he had to do the rest of the day . . .

Should life return to “normal” one day for me then my time spent here with you will naturally diminish.  I’ll be sleeping in the wee hours of the morning instead of wide awake in the recovery phase of a hellish nightmare earlier that evening.  I have already grieved about it, the loss I mean.  So much time has passed with so little getting done in my own life.  Perhaps the tasks that have been completed are not measured on a calendar or my “To Do List?”  For those in Christ Jesus, we know that to be true.

Romans 8:28, encouragement, encouraging scripture, all things work together for good, hope, hang in there

Another example is how I finished reviewing a copy of a canoe and kayak paddling magazine last night for which my husband is the Editor.  I guess I can now add “Assistant Editor” to my resume for my contributions to the first four issues.  Cool beans.  I could list a bunch of crafty Christmas things that I would rather be doing yet that was not my calling for those hours.  Many will be blessed by this sacrifice including me.

Ever feel this way when sidetracked from your dreams, Gentle Reader?  In ways big and small we may struggle to discipline ourselves to do the tasks we must do when our hearts are in another room or time zone.  Know what I mean?

The bottom line for me on this subject tonight is that the sooner I rest in the promises of my Lord and Savior, Jesus Christ, the sooner I will realize that I am perfectly where I need to be.  He will provide everything I need from the breath that is not coming easily to the assembly of a Christmas gift still in boxes strewn here and there.  I know from another tumultuous time in my life that the Lord does answer our prayers in due time.  The waiting, the setbacks, the anticipation make the rewards sweeter.  How can I expect to make it to the finish line with style and grace if I give up on the last leg of the race?  I will not!

So don’t you give up on me either, k?  And please hang tough if you are going through challenging times as well.  If you need to cry out for help then please do so NOW.  Our God promises in His Word that:

The Lord will strengthen him on his bed of illness;
You will sustain him on his sickbed.

Psalm 41:3  New King James Version (NKJV)

He will see us through to our last breath if we but call upon His name.  My Heavenly Father has done so for me a thousand times.  He will do so for you too.  Tonight I am praying for us both.  JJ

Dog in bed

New Sport: Thwarting Disaster — UPDATED

So glad the Lord gave me the presence of mind to cancel a Methacholine Challenge Test today.  I feel exhausted from the prospect that I could have died had I gone through with the test . . .

Let not your heart be troubled; you believe in God, believe also in Me.  John 14:1

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

In the process of diagnosing asthma, a Doc orders a pulmonary function test.  If your lung capacity is deficient for either the intake or exhalation of air, you may have a problem warranting treatment or at least a rescue inhaler.  Since I started having severe chest pain and compression symptoms at the end of March, the LLMD ordered this test for me.  I completed it about a month ago with findings suggestive of mild asthma.  Hmmmm.  I’ve never had breathing problems before and the onset coincidentally occurred during the stress of relocating back to my home after mold remediation.  I was scared.  A lot was at stake.  We had spent thousands of dollars to remediate our home, much of it not covered by insurance or the gift of friends.  How was I going to do after 76 days away from home?  Turns out that I did o.k. initially then the noxious symptoms gradually returned.  Oh well.

We have continued to narrow down and eliminate the potential triggers over these past two months so I can get well.  This takes time and there have been some successes and failures alike. As long as there is an underlying Lyme Disease process (that I am not well enough yet to treat directly), I will have some sickness every day.  But the bottom line is that I did not have difficulty breathing or feel like an elephant was sitting on my chest until the last week of March, 2013!  The LLMD ruled out a heart attack.  Then a negative lab finding for a complication of mold illness suggested that I might benefit from a particular prescription medication, not covered by insurance.  I tried it and am receiving some benefit, gratefully.  The chest pressure is less most of the time.

Today was an exception.  I had a particularly severe reaction to our ol’ church building last night resulting in about 45-minutes of intermittent seizure attacks and marked chest symptoms.  I was still pretty sore today despite taking the medication for the latter symptoms.  So when hearing the risks of the Methacholine (MC) Challenge Test today including a full blown asthma attack, I got really scared.  The MC progressively constricts your airway while a respiratory therapist takes measurements of your breathing.  Holy cripes!  If your values go down 20% then they give you Albuterol to open your airway.  Well isn’t that dandy.  I was given Albuterol as part of the test protocol during the Pulmonary Function Test last month and did not notice any difference in terms of breathing easier.  Thankfully, I had a respiratory therapist who was willing to talk with me in detail today about the test, his experiences, my PFT findings; we agreed about the extreme likelihood that I would react negatively . . .

I feel like I stared death in the face today.  If I would have reacted, it would have not only been a full blown seizure attack AGAIN, but the risk of respiratory arrest.   Holy crap!  Remember the cartoon I posted awhile back about feeling like a lab rat?  This lab rat could have been no more.  Something stirred within me and I crossed out my name on the consent form and wrote, “patient declined test.”

The fear of the Lord is the beginning of knowledge, but fools despise wisdom and instruction.   Proverbs 1:7

When I have a seizure attack with chest compression, I do not breathe for several seconds.  It is by the grace of God alone that my breathing re-starts!  If I try to initiate active movement, such as trying to inhale, the volitional initiation of movement triggers another seizure attack.  A similar reaction happens when trying to talk or move as the attacks are occurring.  Eventually I collapse and need to rest.  Much time needs to pass thereafter before I can function on my own or someone else has to lift me up and begin to move me.  Sometimes I can initiate fine motor movements and not gross motor movements (such as walking or bearing weight on my legs).  Usually my biggest challenge is simply trying to breathe again.  Hyperventilation comes first then deep breaths and labored respiration.  Normal breathing is last.  Thankfully I am not alone in these crises even when I am “alone” . . . .

The Lord sustains them on their sickbed
and restores them from their bed of illness.  Psalm 41:3

This doesn’t really sound like asthma to me.  How about you?  Perhaps some aspects of it are like asthma.  Google it and see whatcha think!  Such a crazy game this is at times.  There just might not be a winner but perhaps an overcomer in my heart?

So my new sport this evening is first to write until my exasperation with the complications of Lyme Disease are more on the computer screen than in my head and shattered heart.  Sorry if this bums you out, gentle reader and spectator.  This day was a bad one.  The sport of living with long term illness continues as I try to listen to the Holy Spirit and all the advisors/coaches He has sent to get through the game of life.  I am crying as I write this.  Crying out to the Lord.  You the spectator have witnessed the athlete getting injured.  Not only is my chest still sore but my heart is bruised as well.  Thankfully, this too shall pass . . .

27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.  John 14:27

Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains.  James 5:7

I talked to my precious husband on the phone from the parking lot of the hospital this afternoon.  God bless that man!  I was exhausted and barely realizing the significance of my experience inside that building when his kind words soothed my soul.  Steve has asthma and has had a Methacholine Challenge Test in the past.  He was worried for me, praying for me.  He agrees that it was too risky to complete it and ’twas better to have refused it.  After we talked I still had a few errands to run, prescriptions to pick up, supplements to purchase, and of course:  just a couple more plants to take home from a mom-n-pop nursery.  So glad Young’s had the Sweet Marjoram I haven’t been able to find anywhere else in the area.  Just saying the name,  “Sweet Marjoram” makes me feel better.

Now that all of this is “off my chest” I can go do what I do best.  It is dark now but that never kept me from gardening before.  Besides this time it’s planting two planters and I can do that in our garage on my very cool potting bench.  My husband’s son, Daniel, gave me that awesome bench 5 1/2 years ago.  Love it.

Sounds like Steve’s home.  Sigh.  All is well.  Thank you for following my story too.