Time for a change

From Family Practice Physician to Lyme Literate Medical Doctor, from Chiropractor to Obgyn, our medical doctor tries to do it all.  I have benefitted from his expertise yet I am still not well.  And when I saw the redness and exhaustion in his eyes during my appointment this evening I realized that he is not well either!

Everyone who sees this gifted physician knows his crazy schedule, his dedication to help everyone in his care, and his history of nearly dying a couple of years ago with his own debilitating illness.  We used to hear how his office conversion to the government mandated computer system was responsible for incredible stress and delays in appointment times.  For example, it was not unusual to call the office in the morning about an appointment scheduled for 10:00 a.m. and not be called in for my appointment until 4:00 p.m. or later.  Forget the ones scheduled after 3:30 p.m. as they were usually rescheduled.  For awhile about one-third of my appointments were re-scheduled, delaying receiving test results or reviewing the status of a particular medical condition for months.  Frustrating indeed.

Yet when there was an acute issue, the Doc was right on it.  When something new popped up I was sent to the hospital in another section of the medical park for labs or scans, held in the waiting room for results, and sometimes seen back in the office much later that night.  To be seen well into the evening was not an unusual occurrence.  My record was an appointment that started at 2:30 a.m.!  He had one more patient after me and had just received notice that one of his pregnant patients was going into labor.  He must have never gone home that night or morning!  Dedication had become insanity.  We talked about it during that visit.  He agreed.  I understand that some scheduling and office procedure changes were put in place for this new year.  As near as I can tell, the staff and Doc are ending their nights before midnight now.  Virtually the same story, different day.

I recently blogged about some important abnormal test results being misplaced for six months.  That has happened another time as well.  Tonight there was only enough time to go over about half of a detailed genetic cholesterol study.  He handed it to me and said, “here, you take this.”  Whaaat?  He thought the “high CBD hemp oil” that I reported was reducing the seizure attacks 40% was vitamins C, B, and D.  Er, no!  After correcting the computer’s voice recognition software two dozen times, I believe he understood what I was saying:  sitting there with my ventilation mask on to avoid seizure attacks from some mysterious exposure in the office.

Mysterious was the exposure until I asked one of the nurses about it.  I had asked before and a different nurse declined comment.  And yet tonight in her own fatigue, a long-time employee openly shared how their office has routine leaks in the ceiling throughout the summer.  The staff has complained about the musty smell and requested testing for mold spores.  Evidently the tests came back “negative.”  The nurses still battle sickness at work.  A friend of mine who is a patient there can detect the musty smell but I cannot.  I just get tic attacks sitting in the treatment room for 2 hours waiting for the Doc!  My worst episode lasted 2 1/2 hours NON-STOP began after midnight dominated by convulsions most of the time!  My husband came to pick me up around 4:00 a.m.!  I’m sure that exhaustion and stress were a factor being in the office so late that night but hey, I was sitting in a water damaged building to be seen by my doctor for mold illness!  Whaaaat?  Soon after that I started wearing a mask every visit!

I have learned so much from my brilliant Doctor.  He is a Christian man who really cares about his patients.  He has provided better care for me for six years here in this smaller Indiana town than I ever received in the large metropolitan area of Chicago.  When my health got significantly worse 2 1/2 years ago I hung in there with him, hopeful that we would find answers.  I was also unsuccessful finding another MD or clinic to address the intractable seizures, pain, etc.  Gratefully, the Lord has now led me to another clinic in Michigan with two physicians specializing in methylation issues and biotoxin (mold) illness, respectively.  After three phone consultations, extensive paperwork, and additional lab testing completed, my husband and I are preparing for my first in-person visit on March 24th.  We will stop at a lab near the clinic for additional blood work to better match Dr. Richie Shoemaker’s protocols for “Chronic Inflammatory Response Syndrome.”  My current MD and I have worked closely on Dr. Shoemaker’s protocol yet neither of us are officially trained; this led to using the wrong laboratories, incomplete test results when the samples were not processed correctly, and improper sequencing of the treatment plan.  Two very expensive medications from an out-of-state compounding pharmacy either did not work or made me much worse.  We tried!  The biotoxin illness Doc at the new clinic works closely with Dr. Shoemaker and is a Christian too.  I am encouraged.  Lyme disease is not the focus at the moment and that’s o.k.

So it’s time for a change.  I still have appointments on the books with my primary care physician as someone will need to monitor ongoing health issues not covered by the new clinic.  He has asked for copies of all of the testing and reports so I am happy to oblige.  With the Lord’s help I will continue tweaking the dose of high CBD hemp oil in hopes of reducing even further the seizure attacks and noxious symptoms that follow.  The Lord is guiding me step-by-step, including through the spiritual leadership of my beloved Steve.  I am so glad I heeded hubby’s advice and did not start seeing every expert who sounded good on the internet!  When moments are better for me, we celebrate and don’t think about the bad times.  We both see examples of how the Lord has used this season in our lives for His glory.  We are closer than ever, more in love than ever before and for that I am grateful.  I am closer to Christ than ever before as well knowing that He heard my truly desperate cries for help the night before I first started the CBD oil.  I was ready to die and it was not to be.  I was spared from further anguish and suffering, turning a corner to better things at last.

If you are suffering this day, this night:  do not give up!  There’s a blogger praying for you Gentle Reader.  More importantly the God Who created the universe knows your name, sees you, knows your pain, and gave his life so that one day your heartache would end.  Please draw near to Him and He will draw near to you.  He will never leave you or forsake you.  Everything will be worked together for good someday if you but call upon the Lord and let Him into your heart.  These statements are based upon His Word and promises that are true today and always.  The Great Physician will see you through, always my dear one.  Take care,  JJ

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

It’s eBook Week

RAEWbanner1 for March 2 to 8 2014 promotion

Looking for hope and encouragement while you or your loved one recovers from a serious illness?  I invite you to check out Hope Beyond Lyme:  the First Year.

The first year enduring and battling a serious illness can test everything we thought we knew about coping with the trials of life.  In this book, I invite you to share the more meaningful moments of my journey as I seek to draw strength from outside of myself to endure the trials of my particular story.  My hope is that you, too, will find strength and hope that transcends your day-to-day experience.  I also hope that you will consider the hope found in God though a personal relationship with His Son.  His presence in One’s life makes a difference in where a person lands when this particular journey of life is over.  Will we have peace or will we have despair?

For the next week, my eBook Hope Beyond Lyme:  the First Year is 50% off!  Just use coupon code WE45A at: https://www.smashwords.com/books/view/371334

Take care,  Just Julie

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!

Psalm 71

Psalm 71

In you, Lord, I have taken refuge;     let me never be put to shame. In your righteousness, rescue me and deliver me;     turn your ear to me and save me. Be my rock of refuge,     to which I can always go; give the command to save me,     for you are my rock and my fortress. Deliver me, my God, from the hand of the wicked,     from the grasp of those who are evil and cruel.

For you have been my hope, Sovereign Lord,     my confidence since my youth. From birth I have relied on you;     you brought me forth from my mother’s womb.     I will ever praise you. I have become a sign to many;     you are my strong refuge. My mouth is filled with your praise,     declaring your splendor all day long.

Do not cast me away when I am old;     do not forsake me when my strength is gone. 10 For my enemies speak against me;     those who wait to kill me conspire together. 11 They say, “God has forsaken him;     pursue him and seize him,     for no one will rescue him.” 12 Do not be far from me, my God;     come quickly, God, to help me. 13 May my accusers perish in shame;     may those who want to harm me     be covered with scorn and disgrace.

14 As for me, I will always have hope;     I will praise you more and more.

15 My mouth will tell of your righteous deeds,     of your saving acts all day long—     though I know not how to relate them all. 16 I will come and proclaim your mighty acts, Sovereign Lord;     I will proclaim your righteous deeds, yours alone. 17 Since my youth, God, you have taught me,     and to this day I declare your marvelous deeds. 18 Even when I am old and gray,     do not forsake me, my God, till I declare your power to the next generation,     your mighty acts to all who are to come.

19 Your righteousness, God, reaches to the heavens,     you who have done great things.     Who is like you, God? 20 Though you have made me see troubles,     many and bitter,     you will restore my life again; from the depths of the earth     you will again bring me up. 21 You will increase my honor     and comfort me once more.

22 I will praise you with the harp     for your faithfulness, my God; I will sing praise to you with the lyre,     Holy One of Israel. 23 My lips will shout for joy     when I sing praise to you—     I whom you have delivered. 24 My tongue will tell of your righteous acts     all day long, for those who wanted to harm me     have been put to shame and confusion.

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

Tonight as my body thrashed about I cried out to the Lord, asking “don’t you see me?”

Tonight I cried out for the Lord to take me, as in take me home.  He did not answer.

Tonight I cried out asking Him not to leave me here this way.  He did not answer.

The after burn of the seizure attacks, flu-spikes, chest compression symptoms making breathing labored, increased pain, and massive neck headache was unbearable once again this evening.  Things are getting worse.  This was my third episode today with over two dozen individual incidences!

My precious husband got out of bed after 1:00 a.m. to get me something to eat in an effort to end the tic attacks that would not stop after the seizures. 

It is now over an hour later and I am stable.  I am beat up.  I am still here!

 I will remind myself to have hope, to cultivate hope that comes through faith in Jesus Christ.  Sometimes He speaks and sometimes He is silent.  And for those who believe in Him, He is always present.

Psalm 71 puts it all together for me right now, so this is how I will pray as I go forth from this night.  And that’s about how far I have gotten.  My tummy hurts.  Time to go back to bed.  I think I can sleep now.