Treatment Update

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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.

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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

The glove on the sidewalk

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

 

 

Lurking in the tall grass

Here’s a little ditty on Lyme disease that I wrote and was published in the Spring 2016 issue of Canoe News (for the United States Canoe Association).  As it goes to print I just wondered if it may help someone out there?  Take care Gentle Reader, JJ

Lurking in the tall grass

by Julie Horney

Somewhere out there by the side of the river, next to your boatmobile or behind the garden shed may be a menace that could change your life forever. You may see it before it gets to you and you may not. It may be no bigger than the period at the end of this sentence!  Perhaps you have been bitten many times before and think you are immune to its wrath. Maybe. Maybe not. One day that could all change so take heed: this message applies to EVERYONE!

Lyme disease is the fastest growing infectious disease in the U.S. Lyme has been reported in all 50 states although it is most prevalent in the Northeast, Northwest, and Great Lakes areas. The Centers for Disease Control and Prevention reported that there were 300,000 new cases in 2012 and estimates based on clinical diagnosis suggest there are over 1 million new cases yearly.*
Lyme disease (LD) is called a “vectorborne” disease transmitted by the bite of blacklegged deer tick imbedded with the Borrelia burgdorferi (Bb) spirochete. LD is often complicated by Coinfections:  other bacteria, protozoa, and viruses carried by the same ticks. Lyme is difficult to diagnose because fewer than half of all patients recall a tick bite or develop the signature erythema migrans (bull’seye) rash; the routine Lyme ELISA screening test has up to 60% false negativity. Similarly, testing for coinfections is also plagued by a high rate of false negativity.  For example, research by the International Lyme and Associated Disease Society (ILADS) finds that joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over the counter antiinflammatory medications such as Ibuprofen, joint inflammation is often masked. Based on these statistics, a significant number people who contract Lyme disease are misdiagnosed during the early stages leading to a chronic form of the disease which can prove even more difficult to diagnose and treat.
Lyme disease is often referred to as the “great imitator” because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment. While it may not be fatal, the consequences of Lyme and Coinfections can profoundly affect the quality of your life. In the words of my own Lyme Literate Medical Doctor (LLMD):
If you don’t treat it then your life will be hell.
Alright so now that I have your attention, let’s dig into the details.  Isn’t there a difference between an acute infection and a chronic infection? The answer is yes. And since only an estimated 50% of ticks carry infection, how do I know that I have been affected if I do not have any symptoms?  Lyme disease is difficult to diagnose without a rash, Bell’s palsy, arthritis, or meningitis but you can still have Lyme and not have any of those signs or symptoms! Many people react differently to the infection and experience fatigue, headaches, irritability, anxiety, crying, sleep disturbance, poor memory and concentration, chest pain, palpitations, lightheadedness, joint pain, numbness and tingling. The key is in the careful medical evaluation of ANY  suspicious insect bite since they are all capable of spreading disease. (The CDC has stated that mosquitos can carry Lyme disease.)
The diagram below shows the proper procedure for removal of an attached tick.
ehp_121-a120_g003-300x133
Removal of a tick from the CDC website****
Using fine pointed tweezers, grasp it from the side where it meets the skin, and gently pull it out in the opposite direction from which it embedded. My husband, Steve, and I each carry a pair of tweezers in our vehicles in addition to a First Aid kit for this purpose.
While the longer the tick is attached, the higher the risk of transmission, it is possible to get Lyme disease even if the tick is attached for less than 24 hours. The salivary juices of the tick, which contain anticoagulants, anesthetics, and immune suppressors, also contain microbes that can be injected at the time of attachment.  (The anesthetic is why you don’t usually feel it biting you!) Transmission of bacteria by ticks attached less than 24 hours has been well documented in animals and a study published last year documented that this can occur in humans as well.*
You may have the tick tested nationwide for free at: http://www.bayarealyme.org/lymediseaseprevention/ticktesting/
Taking a “wait and see” approach to deciding whether to treat the disease has risks.  If you do experience symptoms, you may even need to have more than one doctor evaluate them. Onset of Lyme disease symptoms can be easily overlooked or mistaken for other illnesses. Once symptoms are more evident the disease may have already entered the central nervous system and could be hard to cure. This is one case in which an ounce of prevention really is worth a pound of cure. Work with LLMD to identify the appropriate  treatment option if you have symptoms and if those symptoms persist. There is more than one type of antibiotic available, often beginning with 20 days of Doxycycline or Amoxicillin. Longer treatment is also an option per guidelines at http://www.ILADS.org
Prevention
Strategies for the prevention of tick bites are doable even for the avid paddler who finds himself standing in endemic areas on a regular basis!  First and foremost avoid known infested areas and keep to trails, boat launches, and areas cleared of brush/grass/bushes. Next, invest in clothing treated with permethrin or treat clothing 24 to 48 hours ahead of time with permethrin (which is waterproof through several washings) including paddling shoes.  Tucking lightcolored leggings or pants inside socks or fitted anklehigh water shoes can be helpful; tucking shirts inside pants is also recommended.  There should be no gaps in clothing such that skin is exposed.
An insecticide containing DEET is the standard repellent to use. The Centers for Disease Control maintains that repellents with the active ingredient of picaridin or oil of lemon eucalyptus are as effective as DEET for mosquitos but make NO CLAIMS for their effectiveness against ticks. Similarly, the EPA registers several essential oils and other natural remedies for safety but not effectiveness! Limited alternatives are available by searching their site.**  Assist children in the safe application of all insect repellents and skin checks too. And do remember to protect your pets: dog and cat fur can act like a “tick magnet” carrying ticks inside your home. Consult with your veterinarian about tickprotection for your pets throughout the year.
When outdoors, periodically inspect your clothing and skin for ticks.  Wearing lightcolored clothing will make tick identification easier.  Brush off those that aren’t attached and remove any that are with the method noted earlier. Some keep an adhesivestyle lint roller handy to pick up loose ticks on clothing or pets.  Once you are home, take a shower right away. This will wash away unattached ticks and offer a good chance to thoroughly inspect your skin. Feel for bumps that might be embedded ticks. Pay careful attention to hidden places including groin, armpits, back of knees, belly button, and scalp. This may seem strange but a quick skin check when sitting on the potty can be done anywhere, right?
Why bother? A Quick Story 
Perhaps it was the tick Steve removed on me about 6 years ago or maybe it was the zillion mosquito bites I’ve had over the years that caused my four years of hell with Chronic Lyme Disease?  We are not sure. At first we thought that when I got really sick it was the consequence of a biotoxin illness (exposures to blue green algaeinfested water when kayaking then mold at home). For four years I sought medical advice from traditional, functional medicine, and alternative health practitioners; we spent tens of thousands of dollars out of pocket to no avail. We found secondary issues to resolve that often go along with what becomes a “chronic illness” such as mercury toxicity, Candida, parasites, dental issues, food sensitivities, hormonal issues, and more. Several doctors gave me a psychiatric diagnosis; others attributed it to “fibromyalgia.” Oy vey!
Convulsive episodes every day for 2 to 5 hours has created a living hell for both of us. Sometimes the seizure attacks are triggered by environmental toxins or fragrances and other times it’s the simple act of going to bed or waking up in the morning. The thrashing has created secondary orthopedic injuries that require their own treatment.  Relief is generally temporary until the next round of torture coming within hours.  I had become largely homebound with a litany of noxious symptoms and until recently, bedbound for most of the day, a minimum of four days per week. Extreme dietary measures including a ketogenic diet did nothing. Family visits still require extreme avoidance procedures.
Less and less was I able to cheer my beloved River Bear by the shores of the waterways here in Indiana . . . “gooooo Steeeeve.” I thought that my paddling days, ability to work, and ability to function normally at all were largely over. Welcome to late stage, neuro Lyme . . .
Tis funny how nothing is wasted for those who believe in the Lord’s sovereignty over one’s life.  Initially I did have 5 weeks of antibiotics for a “clinical diagnosis” of LD even though virtually all of the fancy lab tests were negative. That first round of treatment in 2012 nearly killed me. I decided it wasn’t for me. But after treating all of those other conditions over the subsequent 5 years I would eventually become ready for intensive treatment of chronic Lyme disease with high doses of IV antibiotics.
At the time of this writing I am about 3 months into treatment. Placement of a power port by cutting into my chest wall was needed when the treatments got complicated. Neat huh? And at last there’s good news: the big turnaround has begun! Praise the Lord I am getting well!
Fellow paddlers, please take the prevention and treatment of Lyme disease seriously!  Chances are good that someday this will touch the life of someone you know.  Let not my experience be wasted!  Share this information with your friends and family. Take precautions then let’s get on down the river, the beach, the intercostal waterway to enjoy the sport we love.
Perhaps soon you’ll see me as the  one in a Stellar SR Multisport. :JJ
*Source: International Lyme and Associated Disease Society at http://www.ILADS.org
** https://www.epa.gov/insectrepellents/findinsectrepellentrightyou
*** Video for removal of a blacklegged deer tick: http://youtu.be/0wotB38WrRY
****http://www.cdc.gov/ticks/removing_a_tick.html

 

 

 

OC2 Blue Lake7.4.15b

Just doing my job

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An O.T. assisting a client in a tub transfer using bathroom safety equipment.

When I was working in my career as an Occupational Therapist, I coined the following phrase to describe my role to my patients and their families:

An Occupational Therapist takes a look at how a person occupies his or her time and the skills needed to get through the day.

This definition worked well, given the diversity of populations, conditions, and treatment interventions utilized in O.T.  Having a simple, quick definition helped me better communicate my 30+ years of licensed and skilled interventions from a variety of treatment settings that might be called upon at any stage over a course of therapy.  Together we then crafted a course of action to get the person back into his or her life as best as possible.  Funny how the person that may have benefitted the most from all of this is the one writing to you this evening . . .

Recovery from a serious illness has been a case of the phrase “therapist heal thyself” coupled with the expertise of a few other licensed professionals.  My part was to study, research, document, evaluate, revise, manage, and just hang in there by my fingernails to get through these past 4 years.  However I will credit the Lord, Jesus Christ for providing the courage and hope that my husband, Steve, and I needed to actually start seeing some progress.  And guess what, it is starting to happen!  The Lord has allowed recovery to begin!

Six weeks ago I began an ongoing, intensive course of IV antibiotics for the treatment of chronic Lyme disease.  In the interim I experimented with liposomal melatonin, 5-HTP (a precursor to serotonin), and now CBD oil (from industrial hemp).  I believe it is that latter that have helped to move my sleep/wake cycle from that of a brown bat to a gal that is just slightly a night owl.  I am starting to dream again and have a little more energy, clarity of thought.  Also the years spent chasing down mercury toxicity, mold illness, dental issues, and secondary infections have prepared me to tolerate this level of intensive treatment.  Are you ready for the biggest change of all?

The two to five hours per day of violent convulsive episodes is diminishing in intensity and duration!  This has been consistent for about two weeks now.  PRAISE THE LORD!!!!!!!!!!

We are thrilled for some positive change in my condition!  We are now hopeful that the powerful doses of antibiotics will help kill the Lyme bacteria and co-infections likely causing the seizure attacks and other noxious symptoms.  Whoa.  So how do I fill my days?  I am continuing my full time job of daily detoxing, preparing  a specifically crafted diet, maintaining a detailed treatment log, medical appointments averaging daily, supportive relationships, study-and-research, medical treatments (some complications came with the IV treatments), connecting online to forums critical to these efforts, the “stuff of life,” and taking a walk at least once per week.  Maybe this week it will be twice?  Yeah God, the pup will love that one!

Like in the past, right now I am just doing my job.  I am grateful that the Lord saw fit to lead me into the profession of occupational therapy as it provided me the skills needed to manage the mechanics of this illness.  Along the way my beloved Steve has been the greatest friend, confidant, witness, and spiritual leader that I could have ever asked for to walk this road with me.  He has labored tirelessly night and day for me, for us.  Thank you Jesus for Steve.  There are many unknowns and many more months of treatment yet to follow for sure.  No problemmo.  With my Lord and Savior at the helm, I will be fine.  Lord willing, I am going to get well!

Just thought you might like some good news from the “Hope Beyond” blog, eh?  Take care Gentle Reader.  And thank you for your support.  You rock!  JJ