And in the meantime . . .

November 20, 2011 around noon.  I was alone when my body began shaking uncontrollably.  I was having difficulty thinking clearly and my speech was strained.  All kinds of fearful, crazy thoughts ran through my mind including blaming myself for what was happening!   It was the day after travelling about 16 hours to see family out of State and my husband had gotten up early after just a few hours of sleep to go to church and out to lunch with everyone.  Having never fully recovered from viral hepatitis 1 1/2 months earlier and somehow surviving the extended car ride, there just wasn’t any strength left to get up in the morning and join them.  Now I was immobilized and terrified of what was happening to me.  Somehow I figured out that low blood sugar was worsening the symptoms.  Finally I figured out that I needed to call Steve:  he could bring home a take-out lunch for me from the restaurant and I would hang on until he got home.  The only problems is that everyone was stuck on the other side of town anyways, with the drawbridge up that connected the roads between us!  Flash forward about two hours and the episode was over.  I fell into a fit full sleep and showered much later that day, pretty beat up from everything and quite embarrassed too.  What had happened to me?

April 15, 2012 at 3:00 a.m.  I awakened on my birthday with a nightmare and unusual shaking.  The nightmare wouldn’t stop even though I was awake, whether or not my eyes are closed.  I remained awake a long time, unable to fall back asleep.  This incident occurred nine days after beginning to use a Rife machine, six days per week.  (A Rife machine generates wavelengths of light and sound in program sequences designed to match the vibrational frequencies of various tissues and organisms in the body.)  Treatment for Lyme disease had begun in January with a 5-week course of antibiotics then continued with Rife treatments late in March when I could not tolerate the antibiotics.

April 18, 2012 at 9:20 a.m.  After running 15 minutes of various Rife programs, I was shivering uncontrollably.  My hands and feet felt extremely cold.  Fatigue overtook me and I napped almost two hours.  I woke up feeling somewhat rested until crashing after additional treatments including the beginning of a series of magnesium injections.

April 19, 2012 around 5:20 p.m.  I am suddenly awakened from a post-Rife treatment nap with the barking of our dog.  I am unable to move for almost 30 minutes.  My mind is dull yet rested until the second Rife treatment two hours later when I felt depleted once again.  I learned that this can be a typical response to various treatments for Lyme disease and is often called a herxheimer reaction.

April 21, 2012 around 3:30 p.m.  From my treatment journal I note, “moderate then moderately severe tics as I went to take a nap.  Cast out with calling out the name of Jesus.  Calmed.  Re-started.  Called out 2-3 more times and stopped.”   A two and one-half hour nap followed shortly thereafter!  Napping became my pattern after running Rife programs; my days were consumed with managing all the aspects of treatment.

The attacks of tic episodes continued every other day or so, mixed with nightmares most every day through the rest of the month of April.  Beginning May 5th, the low grade and severe tic episodes ramped up to virtually every day.   Most often they occurred when falling asleep after a Rife treatment or when trying to fall asleep at night.  The first extended episode that appeared to be a full-blown waking seizure was on May 12th after a nap.  It lasted 1 1/2 hours!  I struggled to keep myself from hyperventilating or stop breathing altogether.  Talking or voluntary movement were extremely difficult and made the attacks worse when attempted.  I cried!  My body temperature dropped and both thirst and hunger pangs increased dramatically.  I was miserable, exhausted, and terrified all at the same time.  While the nightmares would continue most days for another two weeks, they generally ended and recurred occasionally when taking a new medication or supplement.

Flash forward one year.  We remediated our home for mold early in 2013 and both my medication and supplement regimes had changed many times.  The seizure attack episodes increased to a couple of hours on a daily basis with some patterning in addition to after exposure to noxious stimuli.  I stopped attending worship services at our church since it is a water-damaged building with mold.  A recurrent urinary tract infection required treatment with a series of different antibiotics.  The seizure attack episodes escalated into convulsions 1-2 hours after taking an antibiotic.  My world continued crashing in on me as I began reacting to more and more foods, supplements, and types of noxious stimuli including loud music and bright lights.  The tic and seizure attacks ramped up in the summer of 2013 to 3-4 times per day for a total of four hours per day and continued at this level for the next EIGHT MONTHS UNTIL JANUARY OF 2014.

In January of 2014 I was very beat up from the wretched seizure-like episodes.  Remarkably they generally decreased to three hours-per-day in February after a series of extremely strict dietary regimes:  a stricter, no-low-starch-veggie-Candida diet; Candida and mold-free diet; Candida, mold-free, and low sulfur diet; and finally where I am right now:  Candida, mold-free, and low oxalate diet.  I have religiously documented my treatment protocols and responses to them, tracked trends, consulted with neurologists & a pulmonologist, networked in numerous online forums and support groups, and researched every angle of this illness to no avail.  Overall these days, this sickness is looking more like a biotoxin illness than Lyme Disease as evidenced by some genetic testing of late.

As of February 2014, some improvements have come including being better able to stay asleep and having stronger nails!  My hair is thinner and so am I!  However, I am largely deconditioned from intolerance to a full daily schedule of activities including exercise; headaches, global pain, ringing in my ears, and more have worsened.  I haven’t worked in two years and am homebound much of the week.  Concentrating on my hobby jewelry business is extremely difficult.  Somehow I have still continued to blog and am grateful for a two-week improvement in my cognition long enough in October to publish my eBook:  Hope Beyond Lyme:  The First Year.  I am grateful for all of the wonderful fellow sojourners I have met these past 2 1/2 years and have made some new friends too.  When I see that a non-believer has read this blog, my spirit soars to think maybe the Lord is using my trials to reach others with hope for His glory!  To see the Lord, Jesus Christ, as my sustaining grace and a source of hope for enduring the trials of this life makes this blog more than a journal and for that I am humbled, grateful.

And in the meantime . . . I am ready for the seizure-attacks to stop, of course!  My neck is killing me from all of the thrashing about you know!  I grieve the loss of time, the thousands of dollars, the stress, the isolation, and the strain on my beloved Steve.  Will I become disabled or return to work?  There is only One who knows the answers to that question and another big one, “why?”  Gentle Reader, if you have read this blog before, you know what I am about to write here:  it’s o.k.  I’m going to trust the lover of my soul anyways, no matter what happens.  I may try another treatment approach before I can see the doctors in a new clinic up in Michigan next month.  High CBD hemp oil (legal in all 50 States) has been shown to work well for both children and adults with seizures and who knows, it just might help me too.  However, I have been down this road of hoping for a cure before, only to have things worsen.  Yeah, supreme bummer for sure.  Sigh.  It takes what it takes.  Sometimes we wait and sometimes we go backwards.  If the Lord leads me to some new information and gives me the ability to search it out . . . if my husband agrees . . . if the resources present themselves . . . and if there are no barriers after prayer and sleeping on it . . . sure, Ima gonna try it.

So when it works, Lord willing, you can join me in rejoicing for having hung in there with me along the twists and turns of this difficult journey.  I hope I remember to lean on the Lord when times are good as well as when they are bad.  Please help me keep my Jesus in front of me as He goes before me each day.  Now let’s all get ready for some good news, k!

Crazy Food Combinations

Gluten free oatmeal with beef gelatin for added protein?stop messin with my head

Sautéed celery, carrots, and turkey patties with salt and marjoram?

Baked and herbed chicken thighs?

Almond butter on iceberg lettuce wrapped around a slice of leftover turkey/beef meatloaf?

Almond/coconut milk smoothie with celery, carrot, avocado, and Celtic sea salt?

Yes!  Things sure can get weird when you’re on 3 diets at once:  1)  mold-free due to mold illness, 2) Candida/low sugar and starch due to a systemic infection, and 3) low sulphur due to probable methylation issues.  And you thought trying to lose a couple of pounds for your New Year’s Resolution was challenging?  That’s kid’s stuff  in my kitchen!  At least number 3 is only for 10 days before I add back cruciferous vegetables to see if they have contributed to the noxious symptoms of the past 2 years.  Who knows?  Maybe I’ll figure out how to make pancakes out of squash and coconut flour after all!

In the meantime, note the incredible power of food.  I have a true Foodie friend who was able to help her sister recover from a deadly kidney disease in record time by painstakingly altering her sister’s eating plan.  The Nephrologist was astounded at the improvements in her lab results.  Yes, food is fuel and should require more of our time and attention if we desire better performance from our bodies or health.  While I do wish that my adherence to a mold-free and Candida diet for the past year would have made more of a difference, I know that I would be FAR WORSE if I had been more lax.  I am grateful for the supernatural strength of the Lord to help me shop for, prepare, and tolerate these special foods when I have felt very sick.

Somehow I am not be surprised that the Lord cares for all of these details of my life.

Matthew 6:26  (NIV)

26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?

The food of the earth was created for our nourishment and enjoyment from the very beginning.

Genesis 1  (NIV)

11 Then God said, “Let the land produce vegetation: seed-bearing plants and trees on the land that bear fruit with seed in it, according to their various kinds.” And it was so. 12 The land produced vegetation: plants bearing seed according to their kinds and trees bearing fruit with seed in it according to their kinds. And God saw that it was good.
He has provided so much for us so I am challenged to be a good steward of that which He has provided.  I certainly can make it through the inconvenience and “missing out” of the sweeter and juicier foods for a time if it will help me get well.  I don’t need to know how long this will last; I am just grateful that there are new approaches to try and I only have to go to my local grocery store to find them!
So if you are facing some new dietary challenges this year, take heart!  You are not alone.  The changes you are making might just change your life in more ways than you imagined.  Besides, the smell of almond slices roasting in a little organic olive oil and sprinkled with sea salt is, well, heavenly!  Try it on a salad or topping a casserole in place of cheese and see whatcha think.  ;J