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

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!

A Heart Message from Snoopy and Woodstock

Happy Valentines Day Gentle Reader!
Happy Valentines Day Gentle Reader!

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!

Some things remain a mystery, some not.

An instant later, both Professor Waxman, and his time machine are obliterated, leaving the cold-blooded / warm-blooded dinosaur debate still unresolved.
An instant later, both Professor Waxman, and his time machine are obliterated, leaving the cold-blooded / warm-blooded dinosaur debate still unresolved.

Today I am recovering from a terrible setback.  Turns out the herbal remedy from New Zealand with promising research is horrible for me in my battle with Candida Enteritis.  Will go back to my gentler protocol while I await results from testing that I will submit this week.  Thereafter I will schedule with a new clinic and in many ways, start over.

Sometimes, the dinosaur wins.