Tag: Jesus Christ

Progress not perfection: it’s all in the details

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One of the slogans of the 12-step program is the title of my blog today.  Progress not perfection is my sentiment as I sit on the precipice of either potential progress or doom.  Or maybe it will be that it was doom and is now on its way to progress?  This is a mini treatment update.Progress Not Perfection

First, the potential doom:  I am reacting to most foods, supplements, meds., and treatments in a noxious manner lately.  Then, out of the blue I took a 1/4 scoop of sugar laden cholestyramine (CSM) to attempt to counteract the convulsions that came with 1/2 cup of homemade, oven roasted sweet potato fries.  I had added coconut oil and a clean protein to my quick lunch to balance any extra carbohydrates from the sweet potatoes.  Not sure if it was the carbs or some latent mold in the potatoes but I was down for the count, so to speak, within minutes.  I had a more delayed reaction to them and a couple of other things consumed together yesterday so I wasn’t that concerned.  Mistake.

So I cancelled my 2:00 p.m. IV magnesium treatment; I could not drive myself there.  I figured that I might as well get the CSM treatment over as it causes seizure attacks anyways, even with a 1/4 scoop loading dose of 1 gram.  And to my surprise, the attacks stopped!  I was still pretty wiped out though.  Perhaps there was a war going on inside my central nervous system and the victor was not yet declared.  So all I could do was veg out on the computer for a few more hours.  It sure beat the alternative of lying in bed shaking some more.  Maybe I should have tried to add to my 4 1/2 hours of sleep last night?  Oh well.  Decisions don’t come easy or get made well in this type of mental state!

Second, the progress:  my tolerance for CSM might be improving.  If it can stop the progression of a reaction then maybe I can take it without a reaction by itself.  I think I’ll give myself a day to recover then try to increase it to 2 doses tomorrow.  Lord willing, I may be onto something good!  And if that good lasts for more than 3 doses, well then we might actually have something really good.

CSM is a resin typically administered to lower cholesterol.  Persons with Lyme and mold illness use it in Dr. Shoemaker’s protocol to bind with mycotoxins that have a neurotoxin effect during treatment.  CSM removes the bad guys from the body (according to clinical research); there are some gastric side effects.  I was unable to tolerate it earlier this year during the stress of mold remediation of our home and had to discontinue even a low dose.

It’s dispensed as a very grainy powder with either massive amounts of sucrose or aspartame to cover the taste.  After calling 6 pharmacies and 3 drug companies last week (including being forwarded to an “off shore medical center” in India for one of them!) I hit a dead end trying to locate CSM without sweeteners.  Then a call to my favorite local compounding pharmacist revealed that the powder is indeed available but at incredible expense.  He would investigate further and get back to me.  In the meantime, the Massachusetts compounding pharmacy from which I get my VIP (vasoactive intestinal peptide) package arrived with a brochure that included CSM without sweeteners!  Their price is the same as what I pay for VIP.  It’s expensive.  Turns out that my local pharmacy cannot even purchase it for the price that the MA pharmacy would charge me.  Well then.  A plan is coming together.

Unfortunately my LLMD appointment was cancelled Friday.  I spoke with desperation to the not-so-friendly, overworked receptionist who notified me of the cancellation, pleading for an order for sweetener-free CSM powder from the MA pharmacy.  Have you ever given detailed information to someone on the phone then wondered if they were just pacing themselves on the other end of the line and not really taking any notes?  I had that feeling.  I had no idea if anything would happen until I could confirm everything with the phone nurse next week.  The weekend ended up with many wretched moments as I experimented with the sucrose-laden CSM.  Sugar feeds Lyme, Candida, and fungal/mold infections.  Not good.

So therein lies my caution with advancing CSM, my new wonder drug, until I have the sugar-free and aspartame-free version.  If I’m having mysterious trouble with sweet potato fries oven roasted in 3 types of organic cooking oil to offset the glycemic impact, then I ain’t gonna mess much with the sugary version.  Too bad that I get headaches with aspartame.  Or maybe it’s a good thing.  Aspartame can break down into formaldehyde and is associated with all kinds of health issues.  You know what they preserve dead corpses with right?  I’ll never forget the smell of formaldehyde from gross anatomy dissection lab in college . . .

Oops.  I’m on a bunny trail.  Well thank you for reading this rant and helping me to sort out a few things.  Since the recent expert evaluation of seizures at a major university hospital didn’t yield any new information, I’ve been wondering what the heck to do next.  A person with hours of multiple wretched events per day keeps looking for answers you know, with the brain cells that are left firing in the correct sequence.   The Lord has definitely powered the sustaining grace of this renewed  pursuit of CSM and any mental ability to write about it.

Oh, and some other progress:  just finished the final edits of my upcoming eBook Hope Beyond Lyme:  The First Year.  I’ll do a final read-through and copyright check then publish it online.  Stay tuned for some more good news!

Yeah Lord for anything good that happens from here!  Your strength is shining through once again.  This vessel is broken, cold, and quite spacey.  Help me finish the race you have set before me and publish this work you have created in me.  In Jesus’ name, amen.

*************

UPDATE:  The CSM is on it’s way across country from Massachusetts to Indiana!

He holds me close

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kid having seizure27 My sheep listen to my voice; I know them, and they follow me. 28 I give them eternal life, and they shall never perish; no one will snatch them out of my hand. 29 My Father, who has given them to me, is greater than all; no one can snatch them out of my Father’s hand. 30 I and the Father are one.”  (John 10)

So glad to have the love and care of the Lord this night.

So comforted to have the love and care of my beloved husband each day, each night.

So grateful to have the love and care of some dear friends and a few family members.

So humbled to have help here and there to carry me and my husband on this difficult path of recovery from a serious illness.  We have health insurance, a warm home, nutritious food, and reliable transportation.  We are blessed indeed.

So hopeful for some new treatment directions and a special medical appointment tomorrow; maybe my suffering will diminish soon, perhaps resolve one day?

So weak, sore, broken, pained, sad at times too.  It’s all in the mix.

One thing is for sure as spoken by Jesus:  he has me firmly in his grasp, regardless of how I feel, what I fear, my past experience, and so on.  He is holding me close.  And when I’m next to tears that is a great comfort indeed.

Ever need a hug like that?  It’s there for you too Gentle Reader.  In the great mystery of His infinite love, the Lord holds near to His heart all those that believe in Him.  In these crazy times I can think of no better place to be.  Think about it, won’t you?

John 10 sheep

Sneak Peak: Hope Beyond Lyme: The First Year

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HOPE eBook Cover

Here’s an important peek into the eBook borne out of this online blog with updated material, bonuses, and references.  Stay tuned for publication information, coming soon!  Thanks a bunch,  Just Julie

****************

Final Thoughts

August 24, 2013

“Life is like a box of chocolates.  Sometimes you don’t know what you’re gonna get.” 

Remember this famous line from the movie, Forrest Gump?  (Paramount Pictures, 1994)  Yeah, I “get” this message when the day begins with renewed hope and generally ends, well, somewhere else!  Gratefully, the day is never without hope at some level.

Perhaps you have wondered what you would “get” when you were beginning to read this eBook.  Maybe you downloaded it because of the words, “Lyme disease” in the title.  I appreciate you wanting to learn more about it as it seems I too can never learn enough about this complex and almost sinister disease process that is so difficult to diagnose and treat successfully.  If you would like more information on Lyme disease see the About Lyme Disease chapter at the beginning of this eBook.  I also encourage you to go to the websites of the International Lyme and Associated Disease Society and Mercola.com. 

By now you realize that you have gotten something quite different from me than a Wikipedia description of this and other serious illnesses.  I am hoping that as we close here, you have seen how there can be more to a journey colored by a chronic sickness than the illness itself. 

Most importantly, I hope that you can see how much of a difference it can make to have a personal relationship with God through His son, Jesus Christ, when enduring a serious illness.  He has changed my perspective and transcended my experience over and over again in a way that continues to make a difference.  I could not go on without Him!  Life is just too difficult otherwise.

I hope that you have come to understand that you too can have this personal relationship with God by coming before the Father in prayer and supplication, in the name of Jesus Christ.  As we each approach the “throne of grace,” we must first acknowledge that we are imperfect, live in an imperfect world, and have an imperfect life.  The world is imperfect not because of our mistakes but because of its falleness and that is due to the presence of sin.  Sin in turn affects us no matter who we are as a part of our human condition (Romans 3:23).  We come to understand that we can overcome sin by admitting our brokenness, asking for forgiveness from the Giver of life, and accepting the gift of saving grace to wipe the slate clean:  He then restores us to a right relationship with God.  We are forgiven and free, now and forevermore.  (John 3:16)

The faith needed to believe this truth and go forth comes from reading and hearing His inerrant Word, the Bible.  (Romans 10:17)  When we do make a decision to believe, we enter into a relationship with the God of the universe (and with fellow believers too) that can never be taken away unless we denounce that Jesus is Lord.  We are saved from the guilt of our sin and our perspective in life changes.  We are never, ever alone again as we receive the indwelling gift of His Holy Spirit:  our Counselor, Our Guide.  We also embark on an amazing journey that brings peace, love, joy, spiritual gifts, blessings, and promises that will take us through everything and anything that happens on this earth.  We will not truly know what this is like until we make a decision for Christ.

And one day when our time on this earth is over, we will enter into His presence to live with Him forevermore.  We cannot even fathom the infinite glory of heaven in our finite earthly minds.  In heaven there will be no more suffering, no more tears.  Wow.  None! 

If you have not already done so, and would like to have a personal relationship with Jesus Christ, I encourage you to pray a prayer of repentance and submission right now.  In doing so, you surely will receive:   Hope Beyond Lyme.  And if you do, would you send me an email and tell me about?  I’d like to be among the first to welcome you into the family of Christ.

Take care, Gentle Reader.  Just Julie

So where ya been?

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O.K. so I’m still sick and that isn’t my excuse this time!  So where have I been?  Editing, that’s where!

This past month I’ve poured and prayed over the decision to turn these blog postings into an eBook.  I want to make sure I have the right intentions and that the end result will be something useful to others as well.  In the process of reviewing this past year of New Hope Beyond Lyme on WordPress, it became clear that my followers enjoy messages that are particularly encouraging to persons recovering from a serious illness.  Matters of faith generate the most comments and I’m pleased for that.  To Him be the glory!

I did some research on various publishing formats and have decided to proceed with a no-cost eBook format where I can do virtually all of the formatting of the manuscript and cover art myself.  I have a lot to learn about all of this, for sure!  Lyme Disease will be prominent in the text since the treatment of Lyme was my primary focus for most of this past year.  But the take home message won’t be about a disease . . .

The truths borne out of the trials, struggles, illness, and strife these past two years have once again served to strengthen my faith in the Lord Jesus Christ.  About a year into this season of illness, I began blogging to keep myself sane!  Now looking back over this past year of blog posts, I am grateful to write, has actually brought more hope than tears.  I was so scared of everything in the beginning, particularly when the tic episodes began escalating into full-blown seizure attacks.  I didn’t even write in complete sentences most of the time back then.  The crazy thing is that I generally have more hope and peace now when the attacks exceed 3 times per day, than when they were less!  I have the Lord’s work in my heart to thank for that!  He works in amazing ways for sure.

While I am grateful for the gift of writing, keeping my eyes fixed on the Lord through reading His Word continues to be the most important survival strategy for me in this season of life.  The cool part is that I get to look up all kinds of scripture verses as I pour out my heart onto the computer screen.  I do hope, however, that the New Hope Beyond Lyme eBook will never be a replacement for a fellow sojourner opening His or Her Bible.  Reading a verse here or there in a blog or eBook, on a Facebook Newsfeed, in the signature line of a friend’s email, Tweeted, or in a Pastor’s message is not as valuable as soaking up God’s Word in our time alone with Him.  We can’t dwell in His presence, linger before the throne of grace in the same amount of time it takes to hit, “delete!”  His grace requires a bit of time to reach our weary souls . . .

I do hope, Gentle Reader, that your own faith in God and in the person of Jesus Christ has grown as you have joined me on this journey.  I was reading today in the first chapter of 1st Corinthians where the apostle Paul teaches how we come to understand God through faith and not through an intellectual discourse.  We choose to believe that Christ died on a cross for our sins so that we may become forgiven for our sins, right-with-Him, and begin an amazing spiritual journey rich with meaning as sons and daughters of the King.  To receive the blessings and the promises of a relationship with God through the person of Jesus Christ requires faith.  If we have faith in Christ crucified, it will make a difference in our lives for all of eternity.  That will help us cope with virtually anything, today and tomorrow.

With the testimony of God’s Word as my witness, I submit to you that only with a personal relationship with the Lord, Jesus Christ will any of the stuff we endure in this life make any sense at all.    If we do have this sweet fellowship with Him, the lover of our souls, all of this stuff will be worth it.  And for me, all of this suffering will be worth it as well.  I would not be writing anything if I had not gotten sick two years ago.   Nothing I write will make any difference either if it doesn’t point someone, somewhere to something more than recovery from an illness.

How humbling that Lyme Disease may be used for good.  Such is the, “new hope beyond Lyme,” after all . . .

 

When it’s too dangerous: a treatment update

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Killing bad bugs is serious business.  Who knows. Maybe even cancer will someday be treated the same way we go after Lyme Disease.  At least some of the fibromyalgia and multiple sclerosis approaches are starting to lean in the direction of causation by bacterial infection, parasites, and fungi.

But not all approaches are worthy of pursuit.  Most of you reading this blog know of the struggle I’ve experienced trying to eradicate Lyme Disease and some Co-Infections.  I’ve tried a variety of treatment approaches these past 1 1/2 years after extensive research, networking, and good ol’ trial and error.  Although 1 1/2 years is not a long time for the treatment of Chronic or even Late Stage Lyme Disease, I must say that I have learned a lot already!  Sadly, we are going backwards financially trying to find the best course of action.  And now an important truth became clear to me and my husband this evening from a Biblical principle:

23 “I have the right to do anything,” you say—but not everything is beneficial. “I have the right to do anything”—but not everything is constructive.  1 Cor 10:23

We have discovered that my most recent treatment approach is just too dangerous for me at its current intensity.  I will need to back off on the dosage of the new antibiotic regime to keep from damaging my body.  The seizure attacks of the last 36 hours, while not new to me, might even kill me if we were to continue this course.  To kill off Bartonella (a co-infection of Lyme) is considered by some, the hardest co-infection of them all.  This bacteria adapts as it escapes further into one’s tissues when in the presence of antibiotics and other approaches, making it both a super bug and a smart bug.  Unfortunately, it might be the cause of my chronic urinary tract infection and maybe even the seizure attacks.  My, my this complicates things!

We have decided to proceed with a slower yet persistent plan of attack.  The Rife machine will be on hold for awhile due to my increased sensitivity to electromagnetic frequencies when feeling sicker.  “Game on” is still our approach and we’ll take all the time outs, plays in the playbook, and “fighting Irish” I can muster to win this thing.  Steve will be home this weekend with me for my safety as we transition my care.  I’ve gotten weaker this past week and that is not good.

It is good, however, that we have hope and are one accord with the next steps.  I’ll continue on the protein/oil/vegetable diet to attempt to keep Candida down and replenish my gut flora; pushing fluids and probiotics will be critical as well.  I was dreadfully sick 1 1/2 years ago when I started on a rotation of a few antibiotics and had to stop.  Rife treatments and a host of supplements, tinctures, compounded prescriptions and Epsom salt baths followed.  At least now I think I will be able to tolerate a daily low dose of antibiotics:  the proven track record of care by the International Lyme and Associated Disease Society.  I will also continue with the mold illness treatments of which I have written previously:  VIP and Losartan.

Some things just take time I guess.  Another encouraging note:  after the wretched episodes, my mind is significantly clearer.  The improvement mimics my status pre-illness from when I contracted viral hepatitis 2 years ago.  Perhaps we are finally on to an answer after all?  Who knows.  I’ve had my hopes dashed before many times.  That’s o.k.  For tonight, or rather this morning, there’s a real indication that something is improving!

Have I mentioned how wonderful my husband Steve has been through this whole ordeal?  I am grateful for his unfailing love and tenderness that has never wavered despite the trials we have endured.  Thank you Jesus.  We are leaning on you and thank you for walking with us these days as well.

And thank you too, Gentle Reader.  :J