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!)
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
This past winter I gave it a try for about 3 months after discovering some research linking reduced seizures to consumption of a particular type of cannabis oil. When I found out that there is an industrial hemp oil with only trace amounts of THC and that it would be legal for me to purchase it in my State, I purchased a bottle online. I worked with the manufacturer and a couple of Facebook groups on dosing. My initial results were very encouraging!
Within 2 weeks I required increased drops of HCBDHO to receive the same benefit. This fit the profile of many other users of the product. Some required nearly 1/2 bottle to stop their seizures even if a child was taking it. There are lots of details here so I refer the Gentle Reader to previous posts by searching CBD oil on this site. In general as time wore on, the benefits diminished no matter what the dosing. Also in time I started having bad dreams then bizarre nightmares. The nightmares frightened me. I could not figure out why they were happening! Then I read that some folks are sensitive to even trace amounts of THC: the compound in cannabis oil that creates a high when taken in products that have a higher percentage of this cannabinoid. Well I wasn’t having a good time at all!
Eventually I stopped taking HCBDHO altogether. Now that I am sensitized to it, I do not intend to take it again. The risk of altered thought processes in my precious sleep (that I desperately need to recover from these wretched daily seizure attack episodes) overrides the small improvements that remained after 3 months. The benefits did not outweigh the risks. I am majorly bummed that it did not work for me. Nothing has worked for me. No combination of things have worked for me. I cannot tolerate treatment that works for others without ramping up to violent convulsions. Detoxing is impossible without noxious, severe side effects. Talk about being boxed into a dark corner without a flashlight. Will hope ever shine through again?
Sure it will. Lately I’m experimenting with magnesium threonate and may try a particular brand of Tahitian Noni Juice. The latter helped Kurt and Lee Ann Billings, the authors of Mold: The War Within, who did not do the typical protocols of cholestyramine, activated charcoal or benonite clay to get well. Yup, all of those three caused me noxious, severe side effects as well. Sish. I am very glad that there are new things to try despite the dead ends of my medical team at the moment. Thank you Lord that you are always my hope with or without Tahitian Noni: my forever guiding light Who uses the hardships for Your glory . . .
So for those of you considering using high CBD hemp oil (from industrial hemp) or other cannabis products (from hemp classified as medical marijuana), I encourage you to learn all you can at informational sites such as the following Scientific Review of the research literature: You are also invited to “Like” my facebook page which contains all of the pertinent research that I did when making my decision to try HCBDHO. The articles include the legality of industrial hemp products and the difference between them and medical marijuana. Here’s a link to get you started: Seizure Free Zone on Facebook
Here’s a brief update on my brother, Michael, and me with a prayer request:
At this moment Mike is moving from an acute, inpatient rehabilitation facility to one of the lowest-rated nursing homes in the city of Detroit. The social workers claim that of the 35 facilities they have contacted, St. Francis is the only one who would accept him. The reason? He is “Medicaid Pending” and does not have any other insurance. We are sad and concerned.
Today Mike’s rehabilitation stops until Medicaid is approved. Today Mike learns how the indigent of our society are left behind in facilities located across the street from an abandoned buildings in scary neighborhoods. Today Mike decides whether or not he is a FIGHTER. I only got to talk to him briefly before the transport vehicle came to wheel him out of his private room and begin the next leg of his recovery journey. He has made tremendous gains in cognition, swallowing, self care, transferring from one seat to another, and even walking. Mike has had close monitoring of his medical condition, medications, and test results. The plan to address a complex cyst on a kidney remains unclear as he moves away from his rehabilitation and medical specialists. None of them go to the new facility. It is unlikely that he will receive any rehabilitation therapies from this point forward until his Medicaid is approved. We are sad and concerned.
We are hoping that this transfer is a move sideways and not the beginning of a downward slide. At this point I do not believe that he knows that he will be receiving fewer services. He is concerned about the facility location and the comfort level of his fiancé visiting him in an unsafe neighborhood. Gratefully our cousin, Lisa, is an optometrist who sees patients there every 6 weeks. She has known the staff there for 10 years. We are hoping that this helps place Mike in a favorable light. Lisa has also offered to accompany Mike’s fiancé, also named Lisa, on her first visit to the new place. I am exceedingly grateful for this. I wish I could be there too. I cannot go at this time.
I had my own questionable “move” this past weekend. Difficulty breathing and bizarre, violent seizure attack episodes landed me in the emergency room. I received “treatment” and returned home; the last three days have been marginal yet better in some ways. I saw my family practice physician yesterday and was able to put together a few plans to tighten up my treatment plan. Unfortunately I had to escape outside for fresh air THREE TIMES due to the mold aerosols in his water-damaged office building! Did I mention that I was already wearing a charcoal mask? Geez. I was re-reading the Clinical Summary this morning from my visit and collapsed at the kitchen table into a pile of seizure-like tics. Perhaps the aerosols followed me home on the porous copy paper? Who knows. My gracious husband has seen me through it all, threw out the papers this morning and opened the bay windows to help me revive. Thank you my beloved Steve!
Sometimes it looks like things are going downhill when actually we have just stepped a little to the side. Many hidden blessings have come from my brother’s stroke: developing a closer relationship with his fiancé, rekindling a friendship with my amazing cousin Lisa, and seeing a few family members step forth to love on my brother are wonderful. And in my own situation I now have a biotoxin illness doctor who is willing to go to bat for me when headed to the ER on a Sunday in addition to an incredible husband who is my kinsman redeemer. Steve is willing to love me, care for me, and defend my special needs when needed on my journey to wellness. He believes me that this crap-ola-ski is NOT all in my head and is helping me overcome it too. In both my brother’s and my own situation, I am seeing new expressions of love that have not been there in our lives before. Cool beans. Thank you Jesus!
Gentle Reader, would you kindly pray this scripture with me? I pray that we will lean on the Lord, trust in the Lord, and have courage to move forward when-and-as the Lord leads these next few weeks. I need to rest in the tender care of my Jesus and not get ahead of the work He is accomplishing in today. After all, I do not want to miss the richness of His tender care, His presence in each breathing moment. Such a joy it is to know that He is here carrying Mike this afternoon in that transport van. Such a joy it is to know that He is here too with me and you carrying our thoughts and prayers to our Heavenly Father for His wise care according to His Divine plan for our lives. Perhaps sideways is a good place to be right now.
Want some bulletproof coffee? Let’s go out on the patio and sit for awhile. The sun is shining this afternoon and the narcissus, tulips, hyacinths, and buttercups are blooming!
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):
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.
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
Jesus is for the Wounded 
You must be logged in to post a comment.