Like many times before in January these past 7 years, I am seeking a new direction for my medical care as a serious illness continues. A recent autoimmune blood test found antibodies for a particular type of central nervous system disease. So of course we are off now pursuing the next big thing! Here’s an initial brain dump on the subject (absolutely no pun intended!).
Autoimmune disease (AD) is a disease in which the body’s immune system attacks healthy cells. There are up to 100 different types of AD (depending upon which resource you use) and 3 triggers that I can discern that initiate the onset of symptoms:
Gene expression that gets turned on. This is where your have genetic markers for a particular condition coming from somewhere in your family tree that starts to express itself as active disease when triggered by stress, infection, toxicity, or some traumatic event.
Infection by bacteria, fungus, or viral agents. This appears to apply when the infection is severe or chronic.
Cancer. This may be a chicken-or-egg type of dynamic where a patient may never know what came first.
Docs have diagnosed me with a few conditions in the past that may be considered autoimmune disease. But it wasn’t until my Doc finally decided to start testing me for AD antibodies (Cyrex Array #7) that something concrete was identified and it is serious. The condition mimics a neurological disease that my Father had. The biotoxin illness that triggered my 7 years of chronic illness (beginning the same year in which he passed away, interestingly) and subsequent infections may also contribute to my situation. Thankfully, no cancer has been identified so we will stick with the first 2 triggers as entering me into the AD phase of my long term treatment plan.
So I started researching as usual and discovered two primary approaches to neurological disease in general: 1) manage the symptoms of a debilitating, degenerating course, or 2) treat it with immunotherapy and medications that have the potential to reverse its course when there is an AD component. My Doc suggested continuing various supplements and physical therapy. A second Functional Medicine Doc suggested a “functional medicine chiropractor” and a neurologist who specializes in Parkinson’s Disease. Of course I will consider these but I am also not going to wait around while my body deteriorates without seeking something more substantial! Fortunately it appears that for me, there may be medical treatment options including what is called IVIg that have the potential to REVERSE THE EPISODES THAT APPEAR SEIZURE-LIKE, VIRTUALLY EVERY DAY FOR NEARLY 7 YEARS! Yes, let’s do that!
Yesterday I set up an account and submitted a brief case history for review by the Autoimmune Clinic at the Mayo Clinic in Rochester, Minnesota. Their neurologists specialize in neuroimmunology, participate in the latest research, and are willing to initiate trials of immunotherapies and medications to help their patients. I had contacted a couple of researchers directly, consulted the leader of a regional support group, watched lectures and interviews, and reviewed the literature on the factors relevant to my case. “Time is brain” and “time is cerebellum” appeared several times in the studies, suggesting not waiting around for something to happen. Overall, this field of study is very complex; I believe that I understand the main principles enough to share with my beloved Stevers and, as one accord, proceed in this new direction in my medical care.
As with anything new and complicated, there are many unknowns ahead of us. Will the neurologists accept my case and when will I be able to schedule my consultation, testing, treatment? How much, if any, will my insurance cover? How will I tolerate a lumbar puncture procedure likely needed for comprehensive diagnostic work-up even if administered under anesthesia? Will we be able to pay for the travel and out-of-pocket expenses that, for immunotherapy, could exceed tens of thousands of dollars? Can any of the treatment, if indicated, be completed locally and how many times will I need to return to Mayo Clinic (a full day of driving away from home)? In the winter when it’s too cold to camp, will I be able to tolerate staying in a hotel often laden with fragrances that trigger convulsive episodes? Will our aging and endearing pup Elle be able to travel and stay with us?
You know we are praying about all of these questions already! I am a bit frightened by the diagnosis I have been given, having worked with persons with movement disorders during my career as an Occupational Therapist. Yet I am also in awe that this information came NOW and not 3 years ago when I first considered a consultation at Mayo Clinic. We have learned so much since then, ruled out other conditions that don’t apply to me, treated conditions that put me in a better position to benefit from an Autoimmune Clinic, confirmed that this illness is not psychiatric, and know the process of travelling for medical care (as in my craniomandibular specialist whose care continues).
I feel like the expression on Elle’s face in this picture. Three paws in view and one paw under the rug with the unknowns lurking underneath there as well. Will there be Rubber Duckies or sweetness from the Lord to lighten this journey? Surely. Each phase of this time in my life has brought blessing with the hardships. Besides, you know I love road trips with Steve! And Elle!
Hang tight Gentle Reader. We may be headed north really soon! JJ
Since “high CBD hemp oil” was the most widely read topic in my Hope Beyond blog, I’ve decided to post these helpful resources!
Here is a well-balanced article that includes the definitions of 1) legal high CBD hemp oil (HCBDHO) or cannabis sativa from industrial hemp that I tried over a year ago and 2) medical marijuana. The two are different. Versions that are legal in all 50 states have a 3% or less concentration of THC: the substance that creates the “high” in addition to other medical benefits. Medical marijuana may only be sold in the United States where it is legal and is of a strain called cannabis indica.
By the way, I did trial the use of HCBDHO for about a month then discontinued it. While I initially received a reduction in seizure attack episodes, I had to keep increasing the dose to receive these benefits. As my dose increased to the therapeutic level cited in clinical research, the benefits stopped. Then I started to have waking and sleeping night terrors! I suspected that the trace amount of THC in the product (from Bluebird Botanicals), was too much for me. Sadly, my trial ended. The owners of Bluebird Botanicals assured me that their product was tested for purity and absence of mold mycotoxins. They were most gracious with their time in guiding me in the best use of their product.
Flash forward almost 2 years and I have become familiar with the exemplary work and products of another company, Quicksilver Scientific. Should I desire to try HCBDHO again, here is the source that I would recommend. The delivery system of liposomal nanoparticles facilitates the absorption of CBD directly into the bloodstream within a minute making it comparable to a medical intravenous infusion! Quicksilver Scientific requires that you buy Liposomal CBD through a healthcare practitioner; the site has a Practitioner Locator on the home page. Please contact me for more information locating a practitioner if needed.
A place where you reach your goal, Nirvana, the prize, all you’ve been awaitin.’
Too bad life is often not like that: the good, the bad, the ugly all take their turn
You never really know what you are going to get when your head lifts from the pillow at dawn.
And so goes my new treatment when things have gotten worse before getting better,
How is this even possible when it appeared the Lord orchestrated these steps to the letter.
Now faith means holding on to that which is unseen for the promise of my Lord’s Day
When the suffering will end, be redeemed for glory whether it comes soon or some other way.
I borrowed my beloved’s belief tonight when mine was just too shaken to go on any more–
With love in his eyes, his heart he prayed for healing and more once again like so many times before.
We know our Lord hears us and that we have His will, His heart within our own
I just pray I can hang on this weary road that seems to have gone on just too long.
[Please send chocolate . . . pure unsweetened cocoa butter works best right now. JJ]
My hope this night is the promise of my Lord and Savior that, “He will wipe every tear from (our) eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4 Somehow, someway, I am going to make it, Gentle Reader!
There’s a Barbara Streisand song with lyrics that go something like this:
If we had the chance to do it all over again, tell me would we . . .
Could we . . .
The way we were.
It’s not that I would like to go back to my former self or anything like that. I have had chronic pain for most of my life and lived with pain inside my heart for longer than that. Many of my own mistakes were downright damaging. Still other experiences damaged me and it would take until very recently to be free of their dark spiritual underpinnings. The freedom I experience in today from the drama of yesterday’s trauma was worth the good and bad spent getting here. But there is one part I am not sure what to do with . . .
I was never really physically fit and virtually always held a critical eye toward my physique even when at my ideal body weight. All that did not seem to matter to the stream of the male persuasion that came my way, ever since I was twenty years old. (Not sure what they were waiting for before that!) I always rode my bike as a kid EVERYWHERE. I did not think of it as exercise at the time, just a means to get me to the home of a friend. Several times in college I tried running around the sidewalks of the sprawling campus. “Library Hill” was a killer! Maybe I should say that I ran on most paths except the 27 or so degree incline of Library Hill! Carrying a full load of books up and downhill to class or to study late into the evening at the library should have earned me an extra degree in something or another!
What I miss most is the innocence of moving without thinking about it. Every day lately brings stark reminders of the convulsions that have returned. Every day brings a new version of shaking that hurts my neck the most and leaves some version of a headache behind. Every day the hope of exercising for the enjoyment of it alludes me only because I cannot; I actually had grown to like high intensity workouts before I got sick 3 1/2 years ago. Even with chronic pain I worked out with weights, unloaded my truck bed filled with sod/dirt/mulch, and kayaked for a couple of hours each week. I loved being strong.
Today I miss being strong. The trauma of seizures and convulsions have taken their toll. The sickness after an episode usually lingers for hours, days. I never really know for sure when the next episode is coming although the bedtime and waking-up patterns have been fairly consistent throughout this ordeal. Somehow despite my weakness, I HAVE NOT GIVEN UP for more than a day. Yesterday Steve and I went for a walk with our pup, Elle though most of the time the walking is through the halls of our home or a medical facility . . . or this past Saturday’s date night to the grocery store. It’s something, eh?
O.K. so I am bummed out. I have missed writing and did not blog so as not to bum you out, Gentle Reader, in reporting that the surgery did not stop the episodes as I had hoped. There are tiny improvements and for these I am grateful. I think I’ll need a little longer to recover and clear the anesthesia completely out of my system. In desperation I went on a water fast for 24-hours last week. It was awful! Amazingly I did not have seizures until the 24th hour! I believe the Lord gave me the wisdom through it all to start a ketogenic diet so new research and a new direction began the next day.
A ketogenic diet is a high fat diet where the fat becomes fuel for the body instead of carbohydrates. The version for seizure control (generally used for children) is unlike the keto diet for weight loss in that fats are consumed more than protein “macros.” Grams of carbs are the tiniest portion of the three. The increase in ketones are measured in either the urine or blood and thought to be the mechanism that brings some level of seizure control in 25-50 percent of children. In children the diet begins after a 24-48 hour fast in a hospital. Hmmm. My great Physician led me here after my own fasting experience too. So with the MyFitnessPal nutrition app in-hand, I am moving towards the ideal ratios of fats, proteins, and carbohydrates. Good news: that means lots of bacon! And at least I am off the pureed diet now!
The way we were. Can it be that it was all so simple then? Or has time re-written every line? If we had the chance to do it all over again, tell me, would we? Could we?
Perhaps the real longing requires me to not look back at all. Then what is it Lord? Fill this emptiness, please. Ease this hurting. Thank you for new tracks to run on, so to speak. I still need you desperately to guide me. I realize that I may not be alone in this desire you know. Please comfort the Gentle Readers out there who need you too. JJ