Biotoxin illness not Lyme disease for me

As of yesterday and my second appointment with a biotoxin illness specialist, my hunt for healing will focus on biotoxin illness and not Lyme disease.  Perhaps you noticed awhile back that I changed the name of this blog?  Join me in finding “Hope Beyond” the challenges of today; for me this blog will always give the praise and glory to the Lord, Jesus Christ when victory comes . . .

I found a remarkable video on You Tube that summarizes mold and biotoxin illness.  Please look beyond the promo for his colleague’s book and his mentioning of “ME” or Myalgic Encephalomyelitis.  I do not have ME although I understand that biotoxin illness and ME are similar, much like fibromyalgia and chronic fatigue syndrome have similar manifestations.  Now that my diagnosis is clearer, I will be largely following the treatment protocol of Dr. Richie Shoemaker at:  http://www.survivingmold.com as coached by one of his trained physicians.

See whatcha think and let me know in the comments below.  There is hope!  Just Julie

Looking for significance

Psalm 139 (NIV)

For the director of music. Of David. A psalm.

You have searched me, Lord, and you know me. You know when I sit and when I rise; you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you, Lord, know it completely. You hem me in behind and before, and you lay your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain.

Where can I go from your Spirit?  Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, 10 even there your hand will guide me, your right hand will hold me fast. 11 If I say, “Surely the darkness will hide me and the light become night around me,” 12 even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.

13 For you created my inmost being; you knit me together in my mother’s womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 16 Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. 17 How precious to me are your thoughts,[a] God!  How vast is the sum of them! 18 Were I to count them, they would outnumber the grains of sand—when I awake, I am still with you.

19 If only you, God, would slay the wicked!  Away from me, you who are bloodthirsty! 20 They speak of you with evil intent; your adversaries misuse your name. 21 Do I not hate those who hate you, Lord, and abhor those who are in rebellion against you? 22 I have nothing but hatred for them; I count them my enemies. 23 Search me, God, and know my heart; test me and know my anxious thoughts. 24 See if there is any offensive way in me, and lead me in the way everlasting.

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Nuff said.  JJ


Long before sun up

Recovering from a serious illness sure can make your daily schedule wacky!  I know that I’m not alone when surfing Facebook and find a few lone rangers out there overnight in the various Lyme and Mold forums.  Tis sweet.  Often I get my best thinking, creating and writing done just before sun up.  I used to say it was, “making lemonade out of lemons.”  Yeah, o.k.  I’m just glad to have some moments of clarity no matter when they come!

Here’s the latest fruits of my labors.  Something good from Trinity Jewelry by Design:

Think Spring!
Think Spring!
DSCF9448
Black leather wraps in style!

Brain Dump and CBD

And so I was right.  That is not necessarily a good thing.

The doctor apologized and gave a couple of reasons why he missed 5 pages of an 8-page lab report completed 6 months ago.  We had reviewed the results 3 months ago or rather, the first 3 pages of the report!  As it turns out, the last time this particular set of labs was completed over a year ago, the last 5 pages were missing then as well.  So what is the significance?  Those last 5 pages contain information about daily cycles of two hormones that could explain my ravenous, violent seizure-like episodes in the early morning and evening.  Treatment related to those findings could have alleviated my tremendous suffering for the past 6 months!  However, the doc had nothing to say about that.  He said he actually needs to do more research on how to lower melatonin levels!  Well thank you but I have heard this before from you . . .

My next concern was the potential role of a new herbal remedy I started on the lab finding of severely elevated melatonin.  Looks like there are two compelling research articles stating that the active ingredient in what I am taking has not been shown to elevate melatonin levels.  Whew!  Looking closely resulted in seeing how the active ingredient may actually modulate the inactive ingredients that have an effect on melatonin.  Since this active ingredient has served to modulate one particular trace substance when the latter is in higher concentrations, well, that gives me hope.  The answer to the question of how to lower melatonin might already be in my cupboard!

Here’s what “it” is:  high CBD hemp oil.  This is not medical marijuana nor an oil made from the psychoactive ingredient:  THC.  That would be illegal in my State and actually not necessary to impact seizure-like activity.  Both CBD and THC-laden products are from a cannibus plant yet the plants grown for high CBD oil and their products are legal in all 50 of the United States.  No special procedures are needed to obtain it:  just sort through a plethora of information online to find a pure product with concentrations high enough (pun intended) to affect health.  (You cannot get high from CDB oil by the way.)  And the benefits are tremendous:  intractable epilepsy, diabetes, multiple sclerosis and many more.  Add THC and the list of therapeutic effects increases to include cancer.  Thankfully for me the active ingredient needed to reduce seizures is CBD with only trace amounts of other “cannabinoids.”

Here’s a great place to find an overview of hemp oil, cannabis, how its administered, and the benefits:  www.mycbdresearch.com

The first week experimenting with CBD oil has yielded 3 days with less than an hour of seizure-like activity.  This is a HUGE improvement over the average of 3 hours per day of seizures for EIGHT STRAIGHT MONTHS and the 1-3 hours per day overall for the past TWO  YEARS!  At least once per month the duration increased to 6-12 hours.  Whew again.  I am encouraged.  I have trusted the Lord throughout my research process and even in deciding which product to try.  Receiving the melatonin lab results today may be a confirmation of this decision.  The timing of this situation coming together is very interesting indeed.

Doc did have one idea:  resume using my bright light therapy for 30-60 seconds, multiple times per day to naturally lower melatonin levels.  Cool beans.  You know the old saying, “do what you can, with what you have, where you are.”  Another one goes, “here we go again!” with what could be yet another false start to healing.  Somehow I have a feeling this one will make a lasting impression.  Stay tuned.  I am going to get well!  :J

Addendum:  just opened a new Facebook page entitled, “Seizure Free Zone.”  Like us and join the discussion today!

For Whom the Bell Tolls

Therefore, send not to ask for whom the bell tolls, it tolls for thee.  (John Donne, 1624.  Meditation 17.  Devotions upon urgent occasions.)

man riging bell

Such is the reflection of these famous words scripted by John Donne and later repeated by Ernest Hemmingway in one of his most famous works of literature.  The intent of each author is to emphasize the interdependence of humanity; no man can truly live or function as an island.  Whether we live or die, honor God or blaspheme His name, our actions at some point will touch the lives of others around us given time and opportunity.

Case in point:  I’ll never forget that day in Dominicks, a grocery store in the west suburbs of Chicago, Illinois.  It was my day off from work and I was picking up a few groceries before heading home.  I’m not sure why I was dressed up while running a few errands . . . I do recall wearing my nice and warm, long wool coat to fend off the early Spring chill still lingering outside.  Suddenly at the end of the aisle was my good friend’s dad!  He said a cherry “hello” and explained that he was in town visiting for some family occasion.  Mr. Y. always had a gracious way about him:  asking permission to tell you another story or joke before parting ways.  He laughed about me humoring an older person by talking with him or something like that then shared a quick note to give his regards to my husband.  I looked him straight in the eye.  He had no idea.

Immediately Mr. Y knew something was wrong.  I walked closer to him, recognizing that I was about to open my heart in the middle of a grocery store aisle!  My former spouse was discovered in an affair less than 3 weeks before.  Intervention from our church had begun and my life was in turmoil as my heart was still reeling in crisis mode.  It didn’t help that my grandmother had also died and I was in the middle of facilitating the refinancing of our home (not knowing if I would be living there in the future or not).  All of that stuff was about me and my drama.  What I did not expect was the look on Mr. Y’s face when I told him my story.  Do you know that look in the movies when someone has just been punched in the stomach so hard the person could not breathe?  The smile on his face turned to anguish.  He could not speak.

Mr. Y’s reaction showed me the reality of love between the body of believers or those who call Jesus Christ Lord and Savior.  We bear one another’s burdens (Galatians 6:2).  We know what it means from a human level, a heart level, and a violation of God’s plan for us when a brother in Christ falls.  Craig probably never realized that his actions affected so many people and perhaps did not care.  This was astounding to me.  He was a leader in our Bible church and a gifted Sunday school teacher.  Craig excelled in his work in the mental health field, loved working out, and was quite good at photography.  He loved a good philosophical discussion and we had many.  It is a matter of history that my coming to faith in Christ was facilitated by these very sessions:  Craig helped answer many of my questions and led us to both a seeker-friendly church then a smaller, more intimate body of believers.  I got saved because I dated Craig.  In that Bible church is where I had met Mr. Y and became good friends with his daughter, Deb.  Friends like this are closer than my own family at times.

So where am I going with all of this?  When I am home alone every day, not even leaving the house for days on end, of course it is easy to forget the love of dear friends and family in my life.  Sure the pup looks up at me with soft brown eyes when I walk into the kitchen but it’s just not the same!  My intended beloved, Steve, is away from home a lot and often into the early evening.  Since I don’t feel well most of the time I just stay home if I don’t have an appointment or urgent need for food!  This week was particularly dry in this regard.  As it turns out, most of the week was devoted to adjusting to a new treatment we’re hoping will eliminate the daily seizure-like episodes.  I slept or moped about most of the week anyways; I didn’t notice that I was by myself as the quiet was itself healing medicine.  When I come out of this fog of late and I’m still isolated at home, I must remember that I am totally never alone.

Do you have this confidence Gentle Reader?  We are connected by this blog.  For that I am humbled and honored, that you have taken the time to step closer to me.  We probably resonate some on the issues of life or you would not have chosen to stop by when so many other bloggers have their own yada yada yada to share.  Our connection will be even more meaningful to me if I know that it goes beyond my stories and our simple humanity to the very essence of what gives meaning to life:  a shared faith in God through His son, Jesus Christ.  If you do not yet have the peace, love, and joy that comes from knowing the Lord intimately then I invite you to step before the throne of grace today.  Ask Him to reveal Himself to you and seek Him with a sincere heart through the Bible, His words.  When we repent and invite Jesus into our hearts we receive the indwelling of the Holy Spirit; we are never alone again.  Please tell me what you find, k?

For those of you who share the love of Christ already:  I look forward to meeting with you one day!  Whether in this life or the next, we’re going to have a great time celebrating the glorious riches of a life surrendered to our King.  Standing in the presence of the Lord will wash away our tears and troubles bringing joy beyond what we could ever see today.  May the glimpses of His holiness and glory in the goodness that surrounds each of us sustain you, encourage you, and lift you up until we arrive in our eternal home.  Therein the bell will toll with tales of triumph for all of us.  Such a sweet sweet sound that will be!