I’ve been up late several nights in a row now, updating my eBook whilst blogging on home safety for my new company: Two Step Solutions LLC. While that may appear wildly productive the timing is just too odd for it to actually be that way for me. I am discovering a few unusual things as I examine this new work, this current blog that you are reading, and the tragedy of illness resistant to treatment.
First, my professional writing lacks clear focus. I add too many words and the flow is not there. Oh the subject matter gets covered yet it is not yet up to par. The short articles I am putting out there are intended to build credibility in my profession and an audience for the time when I want to launch my home safety product. Perhaps I need a check-n-balance system before publishing each piece? Yes, something like that.
I am so very dry with ideas to write about that aren’t a re-hash of the saga, the illness. Sure, I have tried to end each blog with something reflective, insightful, Biblical, creative, humorous or otherwise useful. It is simply getting harder to do so when the head-banging that accompanies convulsive episodes goes on FOR HOURS EVERY DAY! You have heard about all of the test results pending. I continuously try new treatments that make sense to me. The outcomes continue to be disastrous. Sure there is hope on the horizon. But for now it is AWOL!
And if a test showed a particular course of treatment that worked, one could be encouraged as he or she ingested/applied/bathed/drank/swallowed it. As for me, hundreds of remedies, diets, treatments, scans, procedures, therapies, adjustments later . . . I am discouraged. Tens of thousands of dollars later . . . I am discouraged. Moving about while beat up on 3 hours of sleep is virtually impossible yet I was called to do it today anyways. My will has tanked. Yes, I am broken and discouraged.
Lost in space. There is no real sense of time here. It comes and it goes with little of meaning to measure it by. The foam in our bed is permanently dented in both places from my dwelling there. Steve and I pray. I cry a lot. I hear that others pray out there somewhere and yet do not contact me anymore. I am invisible for the most part. And that’s just how it goes when you have dropped out of life for a few years. Even blue jeans from Walmart start looking good when I can finally get out of the house on Wednesdays. Eeeek! I am an Eddie Bauer gal dontcha know?
I probably should not publish this. Well stay tuned. I am bound to bump into some kind of life eventually, eh? JJ
Mrs. Sommers uses her interviewing style to cover topics that are usually more difficult to understand when it comes to the complexities of serious illness. She includes a broad range of diseases, treatments, and types of practitioners, only occasionally mentioning her other best-selling books! I especially appreciate the index for locating topics of interest.
This book might have shortened my learning curve if it had been available 3 years ago. May it shorten yours!
Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved. Psalm 55:22
But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel. Philippians 1:12
I am 2 days post surgical removal of 2 root-canaled teeth and THE CONVULSIONS ARE GONE!!! Yipppeeee and praise the Lord! This 3 years of daily hell for me and my beloved husband, Steve, is finally over!
While there is still much work to do to detox mercury toxicity and re-evaluate chronic Lyme and mold illnesses, I feel more optimistic that I will be able to tolerate those treatments someday. Until this week, I was failing. I was bedridden most every day with convulsive episodes. The grief and impact was huge on everything from our finances to my aching neck. My husband no longer got a full night of sleep and this illness had changed virtually every activity inside/outside of our home. How would Steve find me when he came home from work? Would he have to make me my pureed dinner and feed me again before bed tonight? Carry me to the toilet? Our hearts were weary after 3 years of this living hell.
Nine months ago I began investigating how two sore molars in the upper left section of my jaw might be impacting my health. Four dentists and three oral surgeons, a cone beam CT, MRI, and pano plus regular x-rays later (including a consultation out of State) we had no objective data to guide us. Everything looked “fine.” The teeth had bothered me for over 13 years! Fifteen years ago I had all my amalgam fillings removed but was never guided to chelate for mercury. Were there silver filings containing mercury remaining underneath the crowns over these two teeth? We will never know the answer to that question. My saliva had started tasting metallic. Eating started triggering the convulsive episodes. With Steve’s support, we took an expensive leap of faith and pursued a dental solution.
Additionally, seven weeks before what would become the big day, I started eating only on the right side of my mouth. Two and one-half weeks later I started a pureed diet to eliminate the chewing action that seemed to make things worse; all this was quite a feat since my struggle to get well led me to eat low oxalate, virtually dairy-free, and completely sugar/sweetener-free, gluten-free, and mold -free foods too! Another two weeks later and 1 week before the surgery I noticed that using plastic utensils delayed the onset of convulsions after eating. Even drinking my foods through a straw helped initially then ultimately triggered episodes. I feared eating anything at all! The only problem with that was hunger and thirst could also trigger convulsions or make them worse. I felt trapped!
Three and one-half days before the dental surgery my doctor recommended trying an EMF deflecting device. “It might help” he said, like so many other recommendations I had received all over the spectrum of traditional and alternative medical care. After one such technology (a Rife machine called a Beam Ray) I tried 3 years ago to treat “Chronic Lyme,” the daily tic attacks started. Within a year these episodes would escalate to waking seizure attacks then convulsive episodes lasting 2 to 5 hours per day. We had tried to shield me from wireless technology in our home in the past yet the results were initially helpful then inconsistent. This time the GEOMACK from Spain reduced the intensity of the convulsions 50%. That reduction gave me a tiny boost of strength that I needed to physically and mentally prepare for surgery. My husband got some much needed sleep as well! Could their be an electrical cause after all? (See this blog for more anatomy and discussion.)
The morning of the surgery went as usual. Convulsive episodes began shortly after opening my eyes and periodically as we prepared to leave the house. Seizure zips ripped through my hungry and thirsty frame as my beloved drove us to the hospital. We were still reeling from the large check we had to carry with us since the oral surgeon insisted on performing the extractions near a crash cart, I guess. And after some prayers, many silly jokes and one last shake/rattle/and roll with placement of the IV in my arm, the time had come to let go and not look back. We reviewed my situation with the anesthesiologist and oral surgeon, surgical tech, and several nurses. They were not to abort the mission if I seized under anesthesia! Just wait a moment and get the job done.
I’d like to say that I woke up in a calm, blissful state but that simply was not the case. I became nauseous and pain management was a problem over the next day and one-half. Oh well. One thing was certain: THERE WERE NO SEIZURES OR CONVULSIONS! The “battery effect” of dissimilar metals in 2 adjacent crowns over root-canaled teeth WERE FRICKIN’ GONE! No more tazoring of my brain would continue. And hey, if there was hidden infection in the root-canaled teeth then the problems caused therein are now also “history.” The hell is over.
My job now includes retraining my brain to relax when falling asleep instead of bracing for impact. My job now includes remembering all of the relaxation techniques I used to train my patients in psychiatric hospitals to deal with anxiety. I need to rework those memory pathways and feelings of impending doom that followed me, waited for me every night, every morning, every time when I was exposed to noxious stimuli, or even on the clothing or breath of my beloved anytime, anywhere. Hey, no problemmo. I am ready to live and the extended forecast is good!
Thank you and big hugs to those of you who have followed my story for any length of time, You have been an important part of my lifeblood to go on when I could not. Sometimes my husband could not be home with me and I was alone, feeling terrified mostly of even greater suffering and it came. The worst episodes were never captured on YouTube videos because my warrior husband was needed to hold me tightly to keep me from greater harm instead of holding onto a camera. Sometimes the Lord was silent even when I cried out to Him when breathless, facing death again and again when my breathing stopped. When He did speak I gained the courage I needed to face the next trial. In the end, death was not my greatest fear. Dying without my Heavenly Husband was.
But you know what? I made it through. Steve made it through. A new chapter in our lives is about to begin. I’m going to take some time now and regroup. I am very weak. An infusion of my Jesus is needed. The warmest embrace with my beloved must follow. And really good food cannot be far behind. After tomorrow the putty d’ jour will be history! Yeah God!
Pureed Organic Tri-Color Carrots & Cauliflower, Bacon, Organic Beef & Potato Chips, Homemade Broth, and Sea Salt in the Recovery Room!
With love, JJ
But the Lord was my support. He also brought me out into a broad place; He delivered me because He delighted in me. Psalm 18:18b-19
Cast your burden on the Lord and He shall sustain you; He shall never permit the righteous to be moved. Psalm 55:22
UPDATE: The holiday from convulsive episodes did not last, unfortunately. There were many benefits from having these two infected teeth removed: significantly less mouth pain, less congestion in the upper shoulder and neck, decreased TMJ symptoms, decreased auditory anomalies, reduced ringing in my ears, and more. Then there was a miracle: our insurance company covered most of the $10,000 bill. Amazing! :J
Who knew that finely crushed, Unsalted Kettle Potato Chips would be like a salve to my wounded frame today? In the spirit of my previous foodie post, I must say that finely crushed chips make my creamy beef stew-ish soup puree quite special. Since there are potato chips in my belly, life will go on after all!
Yes, there is other good news after enduring 36-hours of hell, ending about an hour ago: we believe we have identified the trifecta-root cause of much of my illness. However, unlike a horserace where a bet on a trifecta identifies win, place, or show, we are not sure of the order of these little fillies:
Two infected teeth with root canals
Inflammation secondary to the infection and
Dental galvanism from dissimilar metals in the crowns of the root-canaled teeth.
Now we recognize that while we certainly won’t know the exact cause until the teeth are extracted and I have treated the infection, if needed. I am on a waiting list for a local surgeon after a trip to see a qualified biologic dentist out-of-state resulted in being passed on to someone else equally far from home. My husband has led us to the decision to find someone else locally; I am on a waiting list to have my appointment moved up from April 2nd with the best local oral surgeon. Those Gentle Readers who have followed me for awhile know that I have thought before that we found the “root cause” of everything. The “it” still could be complicated by underlying Lyme disease, mold neurotoxins and the definite mercury toxicity fueling it all. Yet one thing is now clear: these teeth still have to come out!
Here’s a brief summary of these three new factors in my own words:
1. When a person has a root canal procedure, a dead tooth is left behind. The primary root canals consisting of nerve tissue and blood are scraped out and a rubber-like substance called gutta percha is stuffed into the remaining cavity. While the opening is treated with an antiseptic, no one can ever know for sure if any secondary root canals were left un-cleaned and untreated. Any remaining nerve and blood tissues dies and can provide food for aerobic and anaerobic bacteria.
Between the root canal channel and the outer enamel of the tooth is the dentin, consisting of 3 miles of dentil tubules. These are too numerous to be completely sterilized before placement of the gutta percha. Thus there is a possibility of infection seeping into the dentil tubules. When a tooth is healthy, all of the dental tissues are washed with blood but this is no longer possible with the severing of the blood vessels during the root canal procedure. However, if the infection grows, the bacteria can eventually seep from it’s hidden little factory in the tubules into the jaw bone and surrounding blood supply thus potentially affecting the mouth and rest of the body. It is well-recognized that these bacteria can be exceedingly dangerous.
Lastly, during a root canal procedure the periodontal ligament is often left in place around the dead tooth, adding further risk for infection and necrosis from this dead tissue lying next to the gums or jaw bone. Only in the dental industry is a once-living, now-dead tissue and a dead structure (the tooth) allowed to stay in the body; otherwise this tissue would be surgically removed as in the examples of damaged frostbitten fingers, gangrenous toes, severely burned skin, etc!
2. As spoken by the nurse in my doctor’s office this past week, reddened tissue means inflammation and often indicates the presence of infection. Pain in the upper left portion of my jaw has lasted over 13 years, increasing lately to the point of requiring periodic Ibuprofen and topical treatments such as (diluted) clove oil. I now chew food only on the right side of my mouth, avoid hot and cold temperatures, and consume soft/pureed foods so as to minimize the chewing and pressure on my teeth that trigger convulsive episodes. Geez!
3. Though considered controversial by traditional dentists, it is easy to find hundreds of mainstream and holistic dentistry sites that have described the dental galvanism (aka “battery effect”) that can occur from the use of dissimilar metals in amalgam fillings, crowns, and dental appliances. I had my amalgam fillings (generally consisting 50% of mercury) removed many years ago yet there remains a question if there is any remaining underneath one of my crowns. The bigger issue is that three of the four crowns in my mouth consist of a combination of metals. To establish if the presence of metals (in the presence of saliva) creates any currents between my teeth, yesterday my husband and I touched the probes of a voltmeter to the surface of the two teeth in question. The voltage was TWICE that of my skin on my arm! Steve questioned if this small amount of voltage would be of any clinical significance? Note that microcurrent (significantly less than the voltage we measured on my teeth) is used in rehabilitation for the treatment of pain. This means that the body must be affected by tiny currents. Too bad the current in my teeth is not mitigating pain! Conversely, I wonder if this battery-effect is over stimulating a part of my brain, triggering the convulsions instead?
Now to flesh out number 3 a little more, I refreshed myself on a little neuroanatomy. The upper branch of the trigeminal nerve innervates the upper and lower jaw of the mouth. The trigeminal nerve originates from a part of the brainstem called the “Pons” which sits on top of the spinal cord inside the back of the skull; three branches extend on each side of your head and across the face with the mandibular branch dividing over the top and bottom of the jaw. During dental procedures, this is the nerve into which a dentist injects a numbing agent such as Novocain. The motor division of the entire trigeminal nerve derives from the basal plate of the embryonicpons, and the sensory division originates in the cranial neural crest.
Fifth Cranial Nerve Distribution: Trigeminal Nerve (from Wikipedia 2.27.15)
To hypothesize what electrical stimulation from 1) this battery-effect flowing 2) BACK TO the brain in the first two of these three areas could mean for a person, I took some liberties and looked up the symptoms of the person who has a stroke affecting these three areas. (The cranial neural crest has more significance in embryonic development and stem cell research than the discussion here so I left it out.) My findings are fascinating. Please note that the exact symptoms will depend on which biological “electrical circuits” and junctions are affected since the structures are so small and interrelated; we cannot know for certain which structures will be affected. Regardless, I have listed a few symptoms that I do experience from each of these respective areas during my own seizure attack or convulsive episodes.
Damage to Basal Plate Symptoms: Loss of movement, such as stiff, rigid or weak muscles; tremors or body shakes; aphasia (difficulty speaking); changes in eye movements; or changes in motivation or personality.
Damage to Embryonic Pons Symptoms: Weakness of upper and lower extremity (arm and leg on same side as damage); dysregulation from inhalation to exhalation (difficulty breathing); sleep paralysis (inability to move when falling asleep or after waking up and altered dreams); difficulties with balance (ataxia); dizziness due to vertigo; or clumsiness of a hand or arm. A person with a severe stroke may need help with self-care or feeding as a result.
Wow. These all have happened in some combination with each “tazoring” as I call it. Thankfully there are higher parts of my brain in the cerebral cortex that appear unaffected and thankfully the symptoms are not permanent so far! I would not be able to write this blog if the damage was permanent. But I know I cannot overthink all of this. After the onset of acute upper back pain two days ago, I feared what the range of random electrical charges on my weakened frame could do to my heart. Or was it a heart attack? Well, no. I had gone too far. Pain comes from thrashing around and will be dealt with when I return to physical therapy and chiropractic care sometime after dental surgery.
Wasn’t this interesting? There is much hope in putting all of this together. Please join me in praying for the Lord’s will in all of this. And if it is the Lord’s will, I would love to have these two crazy teeth outta here ASAP! Time for these little ones to go! I prefer to be toothless in Indiana with crushed potato chips on my soup of the day instead of this saga continuing. Even if my hypothesis was wrong, I am grateful for the mental stimulation, the challenge of the hunt. I trust that the Lord will use all of this for His glory. Maybe this insight will help someone, somewhere, someday?
And you know and Lord willing, this year I AM GOING TO GET WELL!!! Yeah baby. Take care Gentle Readers. JJ
If I get to see you in the coming year, please understand that I will be singing songs of joy in my heart! Social isolation has been one of the most devastating effects of serious illness from these past 3 years. Should the Lord allow the circumstances for me to get out for an activity other than medical or a trip to the grocery store, I CELEBRATE!!!
So if I might ask for a few accommodations when we get together and you graciously oblige and I still get sick then blame any negative symptoms you may witness in me as the consequence of illness and not you! Very few folks live in a “clean room” like we have here at home. I did not clean at this level either until it was a matter of survival. Steve did not engage in my extreme mold/contaminant behavior strategies until two years ago. These strategies are necessary for this season of our lives together. Overall I do better when we follow certain guidelines resulting in less reactivity, the worst of which are fewer seizure-like and convulsive episodes which continue daily. We are implementing some “due diligence” from what we have learned to reduce my suffering with the goal of eliminating this illness altogether. We believe that the Lord has allowed these trials for mysterious reasons and ultimately His glory. He is good!
Both Steve and I recognize that there are definite signs that I am getting better. We have trained our eye to search for even tiny changes in the pattern and intensity of episodes, pain, and reactivity to keep us hopeful that one day I will be well. It is happening! So please don’t be discouraged when either one of us might mention that I had a rough night or you witness a significant setback. Recovery is a long, jagged line of progress, setbacks, and lateral “bunny trails.” The overall trending is positive!
The most important accommodations that would be helpful if we get together are as follows.
Meeting in a public place: Select a place with less noise and less loud music. Newer buildings are generally better than older ones; please no historic buildings or ones with known basements or crawlspaces and history of flooding. Restaurants that make their own food with fresh ingredients are better able to modify dishes to meet my food sensitivities. This rules out most fast food places! Letting me know the name and phone number of the establishment ahead of time will allow me to contact them with my needs and make the experience of ordering food more pleasant for both of us! Please do not wear cologne or perfume that day. I will need to greet you and depart with a “virtual hug” to avoid exposures to hidden elements that might be on your clothing or coat. Forgive me if I sometimes forget this step in the joy of the moment when I see you!
Meeting in your home: This is still a situation that I avoid since there are too many variables at this time that may cause serious problems. I cannot come over if you have 1) ever had flooding in your home of any kind from a leaky toilet to a wet basement or 2) have older carpeting. If you are willing to have me then please remove all fragranced products at least the day before we are scheduled to be together (such as plug-in or spray air fresheners, candles whether lit or not, potpourri, etc.) Keeping windows cracked open in cooler weather or open in warmer weather to allow fresh air inside always helps (unless someone is burning something nearby outside!) I prefer to visit in the area of your home without carpeting and sit on non-upholstered furniture. Wood, plastics, and leather are best.
Staying overnight: If we are invited to stay overnight then we will either bring our own linens, blankets and towels, or ask that you wash and dry everything in fragrance-free detergent and softeners (including dryer sheets). Please replace a moldy shower curtain liner with a new one! I will bring most of my own food and hand soap where possible. Providing non-cured, non-smoked meat cooked only with salt, plain oatmeal, plain salad-type vegetables or zucchini/cauliflower without seasonings will be a HUGE treat! I will always bring the extra condiments and food that I can tolerate.
Yeah, I know that this is a lot for a busy household to prepare! Thank you for helping us out with this stuff. Steve and I are exceedingly grateful to have recently obtained a travel trailer which has helped manage all of this tremendously well. (It is a lot of work for us too, I tell ya!) Both of our families and many close friends now live out of State so travel is necessary to see them. This single change in our mode of travel has allowed me to leave our home overnight much more safely and go places from which I have been cut off for most of the past three years. We are humbled and blessed! I really like having a mobile safe house that has already opened up my world, provided privacy during setbacks on the road, and aided sleep with a really comfortable bed that can be hard to find when away from one’s own humble abode at home. Thank you Jesus!
Visiting Daniel and Elizabeth in Alabama
We are hoping that the ongoing extreme avoidance and dietary strategies are temporary; some level of precaution albeit more relaxed than the current level will likely continue for some time. How long will we need to do all of this? We simply do not know. We believe the Chronic Inflammatory Response Syndrome (or Multiple Chemical Sensitivity) is due to mercury toxicity and we finally have the correct treatment protocols to get me well. I have excellent medical guidance and a proven treatment plan to follow. We are hopeful that I will be in better health within this year! I AM GOING TO GET WELL!!!
Jesus is for the Wounded 
You must be logged in to post a comment.