A Plausible Case

As you may have read in the About Julie page of this blogsite, I treated for Chronic Lyme Disease early in the four years that I have been battling serious illness.  I had not recovered my health four months after a bout with viral hepatitis and our Family Practice Physician convinced me and Steve that latent Lyme disease was keeping me sick.  Then the story changed a few times . . .

Treatment for Lyme disease, Candida, mold exposure, mercury toxicity, gut parasites, and infected root-canaled teeth has still left me with the following symptoms four years later:

  • Hours of daily convulsive episodes, every single day
  • Headaches
  • Painful shoulders, forearms, hips, neck, jaw, and more
  • Ringing in my ears
  • Multiple severe chemical, mold, and sound/light sensitivities
  • Significant nutritional and hormonal deficiencies
  • Fatigue
  • Episodic cognitive and emotional setbacks
  • Periodic night terrors, nightmares, waking terrors
  • Weakness and deconditioning
  • Air hunger and chest compression symptoms
  • Neuropathies
  • Severely disrupted sleep/wake cycle
  • Food sensitivities despite a restricted diet
  • Gut dysbiosis
  • Inability to consistently perform activities of daily living or work
  • Social isolation
  • Intolerance to treatment

So in other words, my life is kinda hellish a lot of the time!  Today was no exception.  Then right in the middle of the trauma there were tender encounters with the sweetest man on the face of the earth:  my Stevers.  We talked in between seizure attack episodes, he provided care when I could not move, and we made the most of a low-key day.  It was the “same story, different day” around here.  And something else happened too:  I may have discovered another piece of this wretched illness mystery:  Latent Lyme Disease can affect the gut which in turn can contribute to neurological complications much like the ones that have eluded all of our attempts at recovery.

No, it’s not systemic Candida as I suspected when I wrote my last Treatment Update.  It’s called “Bell’s Palsy of the Gut,” a term coined by Lyme Literate Medical Doctor (LLMD) Virginia T. Sherr.  “Gastrointestinal Lyme disease may cause gut paralysis and a wide range of diverse GI symptoms with the underlying etiology likewise missed by physicians,” states Dr. Sherr in the April 2006 issue of Practical Gastroenterology (p. 74).  There are tests that can be performed to determine the presence of Borrelia burgdorferi along with other microbial pathogens  transferred in tick saliva after a bite.  In two weeks I will have a diagnostic procedure in which these tests could also be performed.  Whoa Lord.  Is that why I felt led to add an anti-microbial to my anemic treatment plan?

God is good.  All the time.  God is good.  Today I felt led to add back a probiotic that I actually was able to tolerate this time.  The new information about Lyme disease may explain the increasing gut inflammation this past year and my supremely negative response to a trial of a far-infrared light treatment to my abdomen.  Or to any abdominal exam.  Or to physical therapy to the hip flexors in the lower part of the abdominal wall.  Or to certain foods.  At any rate, a new door has opened and there are new possibilities for getting well.  Perhaps it is time to re-visit the diagnosis of Lyme disease.

Stay tuned.  This exquisitely wild roller coaster ride of recovery from serious illness is about to reach a new station.  In the meantime, please pass a spoon and 1/2 of a carton of Siggis plain, grass-fed, organic and Icelandic yogurt.  We’re going to get this thing right or keep screaming all the way to the bottom of the next hill until we do!  (I told you that I worked in an amusement park one summer didn’t I?  Yeah, Cedar Point is really cool!)

Cedar Point gatekeeper_wallpaper

 

Inside my heart

If a heart weeps for all that is gone

Must it place value in only that left behind?

If a moment in time is all that we have together

Will you remember me when your last breath reminds you there is none left?

If a baby bunny can nourish itself from my well-tendered garden intended for me

Could the disease inside of me eat away at my strength til there is none left to redeem?

Yeah that last one doesn’t encourage me much so I better stop right there.  I’m struggling to make sense of the 12 hours of seizure attacks that ended yesterday.  Periodic re-occurrences continued of course leaving me afraid to go to bed whenever I got brave enough to go to bed.  Wretchedness with writhing, head-banging, moaning, and more greet me in the first stages of “sleep” every night.  Make sense out of that one!  These episodes make me suspicious of anything that might trigger them.  Inside my heart I am angry,  I am hurt.  I am exasperated.  I am . . .

I am in need of renewal inside and out.  Where are you Lord?  Fill my spirit with your unending grace.  Please make your presence known such that I might endure, recover from this hell.  I submit to You my king.  There is none like You.  For your glory.  Amen.  JJ

 

The Sequel: Same story different day

Don’t you just love a good movie?  The kind where you cannot predict the end until it ends or one where you find out what happened to the characters from the first of the series?  Yes, everyone loves a good story with a happy ending.  As for me, I’m just glad for happy moments!

I decided that it was time to update my video log of the most challenging aspects of the illness I am battling.  Included in my “sequel” are some photos of happy moments and some notes meant to be of encouragement at the end of the story.  Overall I admit that it’s kind of tough to watch.  Sometimes my beloved, Steve, and I (in our attempts to cope with this daily saga) get into a numbing routine where I go off into a back bedroom for a wretched episode then he comes by later to check on me.  I’m safe in bed:  I won’t fall out or anything like that.  He prays as he endures the horrifying vocalizations echoing throughout the house, knowing that there is virtually nothing he can do to lessen the burden.  We simply ride it out until the next one comes along, whenever that may be.

Gratefully we have discovered some things that consistently trigger the seizure-attack episodes or make them worse.  We don’t do these things where possible!  I mean that with nine gatherings last week in celebration of two weddings it was pretty tough to eliminate all extraneous factors.  We did our best.  I made it through five events relatively o.k., was Skyped into another, left two early, skipped a reception, and was carried away from the second to last event after the introduction of the happy newlyweds.  Not bad for a massively ramped up schedule and for someone battling Chronic Inflammatory Response Syndrome.  Or is it Lyme disease?  Biotoxin illness?  Non-epileptic seizures?  No one really knows for sure.

So here it is.  No popcorn needed.  A tissue might be worthwhile.  All prayers are welcome.  I am looking forward to the day when this illness is resolved.  In the meantime I stand on the Rock of my salvation, trusting in my Lord and Savior Jesus Christ to go with me and deliver me in due time.  One day in this life or in heaven, I WILL BE FREE.  It’s the promise in which all of us who call upon the name of the Lord can rest.  Thank you Jesus for your amazing grace.

Time for a nap!  J

CBD Hemp Oil and Seizures

Personal Update:  I continue to experience a 40% overall improvement in seizure activity and related noxious symptoms just 16 days after starting high CBD hemp oil (HCBDHO).  After 2 1/2 years of serious complications to Lyme, mold, Candida and biotoxin illness:  I am amazed!

Here’s the research that I found that led me to discovering this LEGAL alternative to medical marijuana (more on that in a moment):

http://www.ncbi.nlm.nih.gov/pubmed/7413719

http://www.ncbi.nlm.nih.gov/pubmed/7028792

http://www.ncbi.nlm.nih.gov/pubmed/22696383

After seeing that there was authentic clinical research supporting the use of “cannabis” for epilepsy, even though I was diagnosed with non-epileptic seizures, I wondered how I might obtain it.  Purchasing medical marijuana when it’s not legal in your State is a complicated process and risky.  Some persons have obtained State I.D.’s in the state where MM is legal, set up post office boxes and even used the addresses of friends or family who live in the MM state.  I did not feel comfortable with this, even though I was suffering tremendously on a daily basis.

The story of Charlotte changed everything.  Charlotte was 5 years old when her parents became heartbroken over the hundreds of daily seizures their precious daughter had as part of Dravet’s syndrome.  Her father researched alternatives to the myriad of medications that were not working and found CBD medical marijuana.  Finding some to try was difficult even in Colorado where MM is legal since CBD is generally in concentrations too low to make a difference.  CBD can reduce the “high” and confound the benefits of THC found in MM; it was long ago cultivated out of most strains.  The parents found the Stanley brothers who had high CBD hemp, were willing to grow it for Charlotte, and were willing to sell it to them with the proper orders from two pediatricians as required in Colorado.   Charlotte’s seizures stopped for days after the first dose!  She is now gaining in all developmental milestones and reclaiming her young life much to the delight of her parents.  Other parents around the world are flocking to Colorado to get on the waiting list for Charlotte’s Web:  the high CBD cannabis.

I believe it is the Lord who allowed me to ask the question of whether or not CBD (cannabidiol, a type of cannibinoid) is available in other types of cannabis.  While medical marijuana and hemp are the same genus of cannabis but the species containing mostly THC is generally cannabis sativa and the species containing mostly CBD is generally cannabis indica.  From here I will call CBD/cannabis indica:  hemp.  Industrial Hemp is another term for non-psychoactive cannabis.

Industrial hemp is grown outside of the USA and imported for hemp fiber products, oil with elevated essential fatty acids, and more.  When cultivated for high CBD, hemp oil has more physical effects and can be sedative as it acts upon the endocannibinoid system of our cell walls.  There’s a lot of technical stuff here so I’ll save that for another post.  THE TAKE HOME MESSAGE is that you do not have to use MM to get the benefits of high CBD hemp oil:  HCBDHO can be extracted from hemp plants as a nutritional product and that product is LEGAL in all 50 of the United States of America!

Industrial Hemp is grown outside of the USA for fiber, cleaning up soil contamination, fuel, clothing, paper, oil high in essential fatty acids, and CBD oil.
Industrial Hemp is grown outside of the USA for fiber, cleaning up soil contamination, fuel, clothing, paper, oil high in essential fatty acids, and CBD oil.

From here I set out to figure out how a person takes HCBDHO, how is it dispensed, who sells the best products for me, and what companies are reputable.   I did not want a product from a start-up company with an inferior product laced with flavorings, fillers, and sweeteners.  I needed a concentration that would be effective and cost-effective as pure oils can be pricey.  I wanted a company who could answer my questions and had sound business practices to indicate that it would still be there for me next month and next year when I got well.  I believe I have found that product and that company.  (For more information and information on how to obtain a discount, contact me via the Facebook page:  www.facebook.com/seizurefreezone)

Today I just wanted to share that for persons with seizures and seizure-like episodes, there will be hope for many in the use of high CBD hemp oil.  It’s been here all along, running under the radar of controversial medical marijuana.  Who knew?  Now you do too!  Please share this information with others who might be interested!

P.S.  Relief for persons with seizures is just the beginning.  Just Google any of the key words written here “and” a medical condition or symptom (for example CBD and fibromyalgia). You just might be delighted with what you find!

P.P.S. Watch an informative video by Dr. Sanjay Gupta, a former White House Fellow under the Clinton Administration at:  http://www.youtube.com/watch?v=B4GUkzTnFG0   Remember to watch for the mentioning of CBD, THC, or ratios of the two together.   Of course, preparations with THC will require purchase in a State where MM is legal!  :J

My Story in Brief

Here’s a brief overview of my wacky journey to date, written for another blogger.  I’m hanging tough as this time of illness continues, leaning on the Lord and witnessing His grace in my life every day.  I have so much for which to be grateful!  You too?  :J

First Name: Julie
Age:  53
Gender:  Female
Where do you live?  Fort Wayne, Indiana

When/Where do you suspect that you contracted Lyme?  My doctor suggested it as a possibility in January of 2012.  He’s a family practice physician and chiropractor.

When did you first begin to feel ill or start to notice strange symptoms?   I have had fibromyalgia since 1992 in addition to some thyroid and female/hormonal issues.  Regardless, I was the fittest I had ever been in my life when I became extremely ill with viral hepatitis in October of 2011, after kayaking in a local reservoir.  When was unable to recover as time passed, my LLMD suggested underlying Lyme and that I read about mold illness too.

What were they?  The worst symptoms included:  ongoing nausea, increased muscle pain and headaches, decreased activity tolerance, worsened ringing in my ears, back pain, lightheadedness, extreme fatigue, fractionated sleep, and genital, stomach,  and dental pain.

How many doctors did you see before reaching an accurate diagnosis?  If you start from the fibromyalgia diagnosis in 1992, the number would be around 60 including chiropractors and a naturopathic physician.  If you start with October of 2011, it would be 2:  the emergency room NP and my LLMD.

Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?   It’s unclear if the myriad of health issues over the past two decades are related to Lyme Disease or not.  I started treating for Lyme (first with antibiotics then a Rife machine; supplements too) after confirmation of the diagnosis from biomeridian or electro-dermal testing in January of 2012.  A year later we discovered that we had mold in our home and remediated our entire home.  I had a significant history of mold exposure in a work setting about 6 years earlier and a genetic disposition that favored mold illness more than Lyme disease.  Another year later and currently, a systemic yeast infection (level 3 of 4 levels) has taken center stage in my course of treatment.  The treatment of Candida has been as difficult as that for Lyme or mold!

What are the main symptoms that you experience currently?   Virtually every day I feel like I have the flu, experience muscle and joint pain, endure headaches/neck headaches, and battle weakness and fatigue.  The other symptoms noted above persist as well.

The WORST SYMPTOM by far is that of seizure-like episodes!  The first episode happened one month after the onset of viral hepatitis.  Then I had no episodes until I began treating for Lyme disease with the Rife machine and after the initial trial course of 5 weeks of antibiotics.  Seizure attack episodes thus began around April of 2012 and have gradually worsened since then:  generally up to 4 hours per day!  If I did not have a personal relationship with the Lord, Jesus Christ, I would not be able to endure this personal hell. 

What does your treatment regimen look like?   I can no longer tolerate virtually all of the supplements or compounded medications for Lyme or mold illness without the seizure attacks escalating into convulsions!  I have maintained an increasingly and very strict Candida and mold-free diet for the past year.  Treatment focuses on Candida (rotating anti-fungal meds. & supplements as tolerated); I am no longer able to tolerate the compounded medications of Dr. Shoemaker’s protocol for Chronic Inflammatory Response Syndrome (www.survivingmold.com)


How much do your symptoms prevent you from living a normal life? 
My life is severely restricted to chemical/fragrance-and-mold-free environments and settings void of loud music and bright lights.  I have not attended our church in about 8 months as it is a water-damaged building.  Physical deconditioning restricts former activities including kayaking, bicycling, walking and gardening.  I am grateful for the occasional exceptions and was able to maintain some raised bed gardens this past year.  Yeah God!  Travelling is particularly difficult and severely exacerbates seizure attack episodes no matter what precautions we try!  After 30 years as an occupational therapist, including adapting my career with various events of my life, I have not been able to work in 2 years.  I miss working!

What do you like to do in your free time and how is this different than before you were sick?   As tolerated, I blog in the middle of the night at:  http://www.justjuliewrites.com on topics incorporating my faith in God and hoping to encourage others with my story of recovery from chronic illness.  I am grateful to have published an eBook this past October entitled:  Hope Beyond Lyme:  The First Year   In August of 2012, I started making macramé hemp jewelry to keep myself sane; today I am grateful to offer jewelry from two missionary organizations helping families at risk.  A donation will be made to Ianna House (a residence for persons with Lyme Disease) for all Lyme disease awareness items purchased at:  Trinity Jewelry by Design.


What do you want people to know about Lyme?   
Examine carefully and journal your symptoms (response to treatment, etc.), do online research especially at http://www.ilads.org including vector-borne co-infections, join online Lyme forums, do  IGenex testing (www.igenex.com), find an experienced Lyme AND mold literate physician (s), and consider several treatment options as you begin this long journey to healing.

What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?   I don’t know how anyone can recover from this difficult illness without two things:  1) the love, care, and support of other people in your life and 2) faith in the Lord, Jesus Christ who loves you, sees your suffering, grieves with you, and will carry you through the ups and downs of this difficult journey.  He is our true source of hope!  When struggling with hours of seizures at night, He meets me there every time and comforts my weary heart, my weary soul, my weary frame.  Sharing my faith with you is my reassurance that this experience won’t be wasted!  I welcome your thoughts and would love to meet you, Gentle Reader, through my blog (www.justjuliewrites.com) or on Facebook at:  Hope Beyond Lyme.  Take care, Julie