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!