New Year, New Direction

Like many times before in January these past 7 years, I am seeking a new direction for my medical care as a serious illness continues. A recent autoimmune blood test found antibodies for a particular type of central nervous system disease. So of course we are off now pursuing the next big thing! Here’s an initial brain dump on the subject (absolutely no pun intended!).

Autoimmune disease (AD) is a disease in which the body’s immune system attacks healthy cells. There are up to 100 different types of AD (depending upon which resource you use) and 3 triggers that I can discern that initiate the onset of symptoms:

  • Gene expression that gets turned on. This is where your have genetic markers for a particular condition coming from somewhere in your family tree that starts to express itself as active disease when triggered by stress, infection, toxicity, or some traumatic event.
  • Infection by bacteria, fungus, or viral agents. This appears to apply when the infection is severe or chronic.
  • Cancer. This may be a chicken-or-egg type of dynamic where a patient may never know what came first.

Docs have diagnosed me with a few conditions in the past that may be considered autoimmune disease. But it wasn’t until my Doc finally decided to start testing me for AD antibodies (Cyrex Array #7) that something concrete was identified and it is serious. The condition mimics a neurological disease that my Father had. The biotoxin illness that triggered my 7 years of chronic illness (beginning the same year in which he passed away, interestingly) and subsequent infections may also contribute to my situation. Thankfully, no cancer has been identified so we will stick with the first 2 triggers as entering me into the AD phase of my long term treatment plan.

So I started researching as usual and discovered two primary approaches to neurological disease in general: 1) manage the symptoms of a debilitating, degenerating course, or 2) treat it with immunotherapy and medications that have the potential to reverse its course when there is an AD component. My Doc suggested continuing various supplements and physical therapy. A second Functional Medicine Doc suggested a “functional medicine chiropractor” and a neurologist who specializes in Parkinson’s Disease. Of course I will consider these but I am also not going to wait around while my body deteriorates without seeking something more substantial! Fortunately it appears that for me, there may be medical treatment options including what is called IVIg that have the potential to REVERSE THE EPISODES THAT APPEAR SEIZURE-LIKE, VIRTUALLY EVERY DAY FOR NEARLY 7 YEARS!  Yes, let’s do that!

Yesterday I set up an account and submitted a brief case history for review by the Autoimmune Clinic at the Mayo Clinic in Rochester, Minnesota. Their neurologists specialize in neuroimmunology, participate in the latest research, and are willing to initiate trials of immunotherapies and medications to help their patients. I had contacted a couple of researchers directly, consulted the leader of a regional support group, watched lectures and interviews, and reviewed the literature on the factors relevant to my case. “Time is brain” and “time is cerebellum” appeared several times in the studies, suggesting not waiting around for something to happen. Overall, this field of study is very complex; I believe that I understand the main principles enough to share with my beloved Stevers and, as one accord, proceed in this new direction in my medical care.

As with anything new and complicated, there are many unknowns ahead of us. Will the neurologists accept my case and when will I be able to schedule my consultation, testing, treatment? How much, if any, will my insurance cover? How will I tolerate a lumbar puncture procedure likely needed for comprehensive diagnostic work-up even if administered under anesthesia? Will we be able to pay for the travel and out-of-pocket expenses that, for immunotherapy, could exceed tens of thousands of dollars? Can any of the treatment, if indicated, be completed locally and how many times will I need to return to Mayo Clinic (a full day of driving away from home)? In the winter when it’s too cold to camp, will I be able to tolerate staying in a hotel often laden with fragrances that trigger convulsive episodes? Will our aging and endearing pup Elle be able to travel and stay with us?

You know we are praying about all of these questions already! I am a bit frightened by the diagnosis I have been given, having worked with persons with movement disorders during my career as an Occupational Therapist. Yet I am also in awe that this information came NOW and not 3 years ago when I first considered a consultation at Mayo Clinic. We have learned so much since then, ruled out other conditions that don’t apply to me, treated conditions that put me in a better position to benefit from an Autoimmune Clinic, confirmed that this illness is not psychiatric, and know the process of travelling for medical care (as in my craniomandibular specialist whose care continues).

I feel like the expression on Elle’s face in this picture. Three paws in view and one paw under the rug with the unknowns lurking underneath there as well. Will there be Rubber Duckies or sweetness from the Lord to lighten this journey? Surely. Each phase of this time in my life has brought blessing with the hardships. Besides, you know I love road trips with Steve! And Elle!

Hang tight Gentle Reader. We may be headed north really soon! JJ

Twas the morn of endo

Twas the morning of endo

And all through the house

Not a creature was stirring

Not even a louse.

The kind buried deep inside

The caverns of thy bowel

Who knows what’s it’s name

To be extricated via trowel.

I digress to my gardening

Terms instead of “incision”

For to bear more pain, discomfort

Is not something I can envision.

So to sleep, aye to dream

Via chemistry or exhaustion lo

We soon will have answers

Perhaps by time of ho, ho, ho!

Will this be a blessing

In disguise as gone before

Suffering giving birth to hope

We shall pray as inside goes the scope.

For H. Pylori messes the axis

Of the gut with the brain

And causes problems like mine:

Seizures on top of stomach pain.

Could this be the work of the Lord,

The prayers at once coming true?

Oh heck at least the deep snooze

Will be sweet on this Tues.

The Chips Under the Bed

They should be alright after about a week in the heat, right?  Ugh.

Usually when “the bus driver” and I come home from a camping trip, we empty the travel trailer of all food that very night.  Of course it may be 3 in the morning but it all comes out nonetheless.  Not this time.  This time was very different.  The unopened bags of chips are still in the storage compartment underneath the bed and we have been home for SIX DAYS!  Gratefully the ants on the driveway have not found them yet!

I really don’t know where to begin to tell the story of our attempt to bring a family member here from out of State to visit, to maybe live with us.  This was a huge undertaking for all three of us:  a journey that began over 6 months ago that was actually cancelled the first time around.  Perhaps it will be best to unpack the situation in a few blog posts over time as I begin to recover from what was largely a failure.  But there is good news:  my Aunt is healthier, stronger, more mentally sharp, conversant, happier, and overall functioning significantly better than when my hubby, Steve, and I picked her up in Florida 8 days ago.  As for me, not so much.

Last night was one of the most horrific scenes of recent memory.  After a total of 12 hours finally getting some errands done with a late night Doctor appointment too, I had the most frightening convulsive episode imaginable.  My threshold of reactivity had been plummeting with each passing day that my Aunt was travelling or living with us.  We had taken extreme mold avoidance procedures and she was wearing all new clothing that I had specially prepared for her.  Her belongings from Florida were cleaned and secured in plastic storage bins in our garage; only doubly-freezer-bagged supplements and medication were in the house in a remote closet.  She lived in an inadequately  maintained and moldy living environment laden with the fragrances that most women like.  We took extreme measures with her stuff but never considered the detoxing of her body to be the toxin most noxious to me; her skin scent reflected several different problems beyond hygiene and no amount of bathing or washing of linens/clothing was helping me fast enough.  I crashed fast.  She, on the other hand, (in our very clean and climate-controlled home with exceedingly healthy meals, rest, and loved ones nearby) quickly regained skills and energies she had lost in the past year.

I was unpacking groceries from our local Meier when an odd feeling hit me.  The warning signs that I learned to recognize in the past when at my sickest with this complex/biotoxin illness had changed.  The odd symptoms ramped up so quickly into involuntary full-body shaking episodes that I barely had a time to get to a safe position to prevent injury.  These kinds of episodes are very dangerous!  So I was standing in front of a counter filled with plastic bags of groceries when my eyes drew in to close and all I could do was kind of lean-and-cling to the edge of the refrigerator as the convulsions began.  They went on and on for at least 20 minutes until my husband would discover me and carry me to the bedroom.  The repetitive oscillations injured my spine from one end to the other.  I could not move my body and was terrified of falling.  Trying to relieve the cramp in my right calf triggered a rebound, a worsening of the episode.  I just held on . . .

Things were no better once lying down.  The involuntary shaking traumatized my neck and my body temperature began to drop.  I could not speak when I needed to and breathing was difficult.  Time either stood still or passed along quickly, I have no idea which one.  I couldn’t even cry out my angst until much later.  Then the visual anomalies began of swirling shadowy circles on the ceiling of our bedroom.  Steve left and returned a couple of times as he tried to help figure out just what caused this and more importantly, what to do to make it stop.  He sniffed my clothing and found them to be musty.  That discovery pointed to my hours trying to get special requests for everyone at the grocery store — a water-damaged building that was problematic for me before their remodeling.  I guess it is still a problem!  My Beloved removed my soiled clothing and the amplitude of the shakes lessened.  But by then the weird, demonic-like writhing and vocalizations had already begun.  It is terrifying to endure this hell.  I prayed for the Lord to take me.  I searched for the white lights but did not find any.  Three hours went by before I could function again . . . what was left of me, that is.

Repeated biotoxin exposures had lowered my threshold of reactivity.  I was at the lowest point, last night, after doing significantly better these past 5 months.  Looking back it all makes sense:  cumulative exposures began when helping my Aunt for five hours on each of two days to do laundry and then pack for this trip in her moldy State of Florida.  It rains there every day now and she has had water damage in her condo several times without remediation.  I wore a charcoal mask during our time there but the conditions were still unbearable.  (Even Steve agreed and had some symptoms.)  Have you ever had to wear a mask in 90 degree heat and humidity while doing physical and emotionally exhausting work?  I had a stress rash on my chest, at least 12 irritated mosquito bites, soreness from dental adjustments from my Craniomandibular Specialist in town, and to deal with a cognitively impaired and severely anxious family member who still struggles in facing her brain disease.  The process was exceedingly painful, frustrating, exhausting.

In another post I will outline the procedures that we used to attempt to implement extreme mold avoidance to be able to care for a family member in crisis.  We simply could not leave her in Florida any longer.  For today, I am grateful that I did survive last night because I got to see a miracle in action.  No, it’s not only the organic lime corn chips that are alright tonight.  I am completely exhausted yet stable and have not had any episodes since she left our home around 10:00 p.m. (and I cleaned, tossed bed linens and other things out of course).  This is the first time I have been stable in 4 nights.  The miracle is that when I was able to get out of bed at 5:00 p.m., my Aunt’s friend from Michigan had arrived and was sitting with her on our patio outside.  Well hello Dean!  He was offering to drive her back home to Florida.  While I disagree with many aspects of this arrangement, I was in no position to decline a solution that could help stabilize me:  her now former caregiver in crisis.  She left with him after some dinner, some packing, some very sad goodbyes.  Our visit wasn’t supposed to end this way!

Aunt Lori with Dean at Dinner 7.12.18

Looks like the chips and me are going to be fine in a little while (as the bags are still out there in the Camplite in the driveway).  Steve is grateful for the possibility of a full night of sleep.  We shall recover.  I am grieved that things didn’t work out with my family member and for the torture I had to endure trying to care for her.  I am glad that we could give her the gift of renewed health; that I discovered where I am at with this ongoing illness; and that our Lord is there to carry us, to act, to make His presence known no matter how hot things get in our lives.  Please join me in praying for my Aunt.  Dean won’t be staying with her very long and . . . I had to let her go from our care.

JJ

Our God Reigns!

Seeing this sweet perching of morning doves is such a mixed blessing this morning.  They are able to sit there because yesterday I was able to cut down the massive out branching of a clematis from lower on the trellis.  Also washed the flagstone patio of dirt and some algae.  I should have worn a mask for both projects.  Acute sickness and violent convulsive episodes followed within the hour and at the beginning of a sweet Skype call with my hubby’s son and family.  So sad.
However, the experience was diagnostic in that I am dealing with biotoxin illness now more than anything else.  Also I am tolerating targeted treatments for this for the first time in 4 of these 5 1/2 years of illness.  Lord willing, I am going to get well!
Gentle Reader, let the morning doves portray the hope that I have each new day in my Lord and Savior,  Jesus Christ.  No matter what may come, our God reigns!  Very fitting the week before Easter don’t you think?

JJ 

Treatment Update

outnumbered

The concept of negative numbers to me is as mind-boggling as that of anti-matter.  If something can be measured on an integer scale then I suppose the values could go up just as easily as they could go down.  But when they go below zero, which is nothing, how can anything be less than nothing?

Perhaps the answer depends upon to what subject the scale is being applied.  Ha!  I would love for my personal scale of symptoms to be at zero.  I would love for the intangibles wreaking havoc in my life to be less than nothing as well.  But that is just not how it is.  This past Fall was very bad, indeed.

More days this past Fall than any other time since I got sick over 4 years ago, did I write “Sick Day” on my calendar as the activity that characterized the entire day.  That means that over 8 daytime hours were spent in bed due to an inability to perform any goal-directed activity:  about 3 days each week.  That stinks.  I had three trips to the emergency room when exasperated with noxious symptoms, more variety in the traumatic nature of seizure attack episodes, an increase in triggers of episodes (which were unclear more of the time), and less ability to perform my activities of daily living.  Steve had to physically care for me (from toileting to feeding) about four times each week.  This year was the first time that I was unable to complete both my Spring and Fall clean-up chores for our gardens.  An occasional meal out with Steve has ceased.  There even was a blow-up with my Doc in which he suggested I might work with someone else.  He admitted that he doesn’t know what to do.  Fine.  But who else would that be?

So here is my status:

  • Results of blood tests and stool tests are now pending to identify microbes that may be keeping me from getting well.  Flare of systemic Candida is one possibility.
  • Chronic Lyme disease is back on my radar as a possibility so for these first two items I have started to take an anti-microbial supplement every day.
  • Mercury burden is significantly reduced yet its role in ongoing illness is still unclear.
  • Dehydration is a daily battle regardless of how many fluids I ingest or receive via IV.
  • Continuous daily seizure attacks total 2 to 5 hours every weekday and often increase to 8 hours at least one day per week.
  • Social isolation continues to be a problem.  I am grateful for a weekly Skype Bible/prayer time with fellow bloggers and may add a telephone support group soon.
  • An extremely restricted diet (sugar/sweetener-free, dairy/mold/gluten-free, low oxalate/copper/meat) only becomes more restrictive as time goes on than more permissive.  There are often episodes after eating and I do not know why.
  • Physical therapy has generally helped to reduce neck and other pain yet the 30-minute convulsive episode at the end of nearly every visit is burdensome.  I bring my own sheets and graciously they avoid fragrances around me.  They are saints!
  • Generally I am only able to leave the house for medical appointments, grocery shopping, etc. twice per week, remaining homebound the other days.  Recent exceptions:  two wakes!
  • Physical exercises and activities, including my P.T. home exercise program, are rare due the likelihood of triggering episodes.
  • Travelling, even with our super clean travel trailer, increases sickness too much to bother for awhile.  Setting it up takes me 3 weeks and cleaning it afterwards takes 3 weeks as well!  Oy vey.

So now my pity party is over and I have nothing left to say.  I am praying constantly for the Lord to keep my heart from bitterness yet I fear that I am losing the battle.  Crying comes forcefully during the setbacks and I am concerned that it is more a manifestation of illness progressed to my brain than true grief.  My husband Steve carries the burden of all of this in his own way.  He is a saint and my hero.  Thankfully he has a great support network at church and work, his athletic activities, and lots of social outlets to keep him going.  Steve is an amazing man surely one after the Lord’s own heart.

I am hopeful that the anti-microbial treatment will help me; sometimes it even stops the episodes.  Yeah God.  However I am very stressed about the upcoming holidays.  Maybe there will be a “Christmas miracle” at our house too?  Lord willing, the numbers in my life will improve in a positive direction.  In the meantime I will be hanging tough.  It’s the best I can do.  JJ

senior numbers