Navigating the Mine Field of Recovery

Those of you in treatment for a serious illness know what this title is all about:  trying to figure out what will bring recovery or remission without making you feel worse!  Oh yeah.  Patients battling chronic illness talk about “herxheimer reactions.”  That is where either die-off or some kind of healing crisis brings on worsening of symptoms and even new, noxious symptoms.  Not fun.  So what is a person to do?  Unless otherwise advised by your trusted healthcare practitioner, here are some things that have been helpful for me:

  • Slow down your treatment protocol or take a break in treatment.
  • Try only one new thing at a time and at a lower dose if possible.
  • Take binders such as benonite clay, activated charcoal, chitosan, and binders of heavy metals (e.g. Intestinal Metals Detox).
  • Drink extra fluids especially pure water.
  • Add some hot lemon water first thing in the morning on an empty stomach.
  • Eat bitter foods which help support liver and kidney drainage channels (such as select herbs, radishes, dandelion root tea).
  • Do what you can to keep your bowels moving at lease once every day, minimally!
  • Step up your preferred method of detox such as salt water baths, infrared sauna, colon hydrotherapy, and exercise as tolerated.  Even massage, physical therapy, and chiropractic care can help release waste products trapped in your tissues.
  • Add nutritional supports for detox as you can such as glutathione (or precursor of lactose-free whey powder), vitamin C-rich foods, and minerals (such as magnesium, Dead Sea salt baths, Celtic sea salt, Quinton Quintessentials, and the like).
  • Make rest a priority!  Healing takes a lot of energy!
  • Pray.  The Lord cares, hears, and will lead you unto Himself if we but call upon His name:  Jesus Christ.  There is no greater comfort than this Gentle Reader.

So this is where I am at these days.  Last month I had to take a nasty antibiotic for the same infection and it hurt me badly so I ended it at the short end of the recommended treatment range.  Then I stepped up nutritional supports before adding a new treatment.  I tried to add a new biofilm-buster when treating a gut infection and reacted poorly, so I will take a break from it for now.  This month I was able to tolerate hot lemon water with manuka honey which is a combo I have not tolerated in years!  Changing brands of glutathione helped me to start taking this critical element in the 3 phases of detox, yeah God!  Also, using a combination of binders has helped slow down some overnight convulsive episodes.  I hypothesized that killing infections  released  toxins inside of the bacteria and fungi targeted, contributing to an increase in episodes.  So these days I am really glad for the leading of the Holy Spirit, and a myriad of webinars from really smart researchers who suggested binders.  “Yeah God” for the relief that has followed.

Psalm, 7, 37, rest in the Lord, wait, patiently, Him, Lord, peace, Christian, healing

I guess then it is time for a nap.  No matter that it is a beautiful day outside.  Naps are a beautiful thingy too ya know.  Lord willing, I am going to get well!

Take care, JJ

 

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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