A Heart Message from Snoopy and Woodstock
Tag: candida
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!
Bein’ Grateful
Just a little something in honor of my 7-Day Dietary Challenge: Candida + mold-free + low sulphur. Sish! Here we go again! And still grateful to have something else to try. Squash anyone? Noooooooooooooo!
My Story in Brief
Here’s a brief overview of my wacky journey to date, written for another blogger. I’m hanging tough as this time of illness continues, leaning on the Lord and witnessing His grace in my life every day. I have so much for which to be grateful! You too? :J
First Name: Julie
Age: 53
Gender: Female
Where do you live? Fort Wayne, Indiana
When/Where do you suspect that you contracted Lyme? My doctor suggested it as a possibility in January of 2012. He’s a family practice physician and chiropractor.
When did you first begin to feel ill or start to notice strange symptoms? I have had fibromyalgia since 1992 in addition to some thyroid and female/hormonal issues. Regardless, I was the fittest I had ever been in my life when I became extremely ill with viral hepatitis in October of 2011, after kayaking in a local reservoir. When was unable to recover as time passed, my LLMD suggested underlying Lyme and that I read about mold illness too.
What were they? The worst symptoms included: ongoing nausea, increased muscle pain and headaches, decreased activity tolerance, worsened ringing in my ears, back pain, lightheadedness, extreme fatigue, fractionated sleep, and genital, stomach, and dental pain.
How many doctors did you see before reaching an accurate diagnosis? If you start from the fibromyalgia diagnosis in 1992, the number would be around 60 including chiropractors and a naturopathic physician. If you start with October of 2011, it would be 2: the emergency room NP and my LLMD.
Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what? It’s unclear if the myriad of health issues over the past two decades are related to Lyme Disease or not. I started treating for Lyme (first with antibiotics then a Rife machine; supplements too) after confirmation of the diagnosis from biomeridian or electro-dermal testing in January of 2012. A year later we discovered that we had mold in our home and remediated our entire home. I had a significant history of mold exposure in a work setting about 6 years earlier and a genetic disposition that favored mold illness more than Lyme disease. Another year later and currently, a systemic yeast infection (level 3 of 4 levels) has taken center stage in my course of treatment. The treatment of Candida has been as difficult as that for Lyme or mold!
What are the main symptoms that you experience currently? Virtually every day I feel like I have the flu, experience muscle and joint pain, endure headaches/neck headaches, and battle weakness and fatigue. The other symptoms noted above persist as well.
The WORST SYMPTOM by far is that of seizure-like episodes! The first episode happened one month after the onset of viral hepatitis. Then I had no episodes until I began treating for Lyme disease with the Rife machine and after the initial trial course of 5 weeks of antibiotics. Seizure attack episodes thus began around April of 2012 and have gradually worsened since then: generally up to 4 hours per day! If I did not have a personal relationship with the Lord, Jesus Christ, I would not be able to endure this personal hell.
What does your treatment regimen look like? I can no longer tolerate virtually all of the supplements or compounded medications for Lyme or mold illness without the seizure attacks escalating into convulsions! I have maintained an increasingly and very strict Candida and mold-free diet for the past year. Treatment focuses on Candida (rotating anti-fungal meds. & supplements as tolerated); I am no longer able to tolerate the compounded medications of Dr. Shoemaker’s protocol for Chronic Inflammatory Response Syndrome (www.survivingmold.com)
How much do your symptoms prevent you from living a normal life? My life is severely restricted to chemical/fragrance-and-mold-free environments and settings void of loud music and bright lights. I have not attended our church in about 8 months as it is a water-damaged building. Physical deconditioning restricts former activities including kayaking, bicycling, walking and gardening. I am grateful for the occasional exceptions and was able to maintain some raised bed gardens this past year. Yeah God! Travelling is particularly difficult and severely exacerbates seizure attack episodes no matter what precautions we try! After 30 years as an occupational therapist, including adapting my career with various events of my life, I have not been able to work in 2 years. I miss working!
What do you like to do in your free time and how is this different than before you were sick? As tolerated, I blog in the middle of the night at: http://www.justjuliewrites.com on topics incorporating my faith in God and hoping to encourage others with my story of recovery from chronic illness. I am grateful to have published an eBook this past October entitled: Hope Beyond Lyme: The First Year In August of 2012, I started making macramé hemp jewelry to keep myself sane; today I am grateful to offer jewelry from two missionary organizations helping families at risk. A donation will be made to Ianna House (a residence for persons with Lyme Disease) for all Lyme disease awareness items purchased at: Trinity Jewelry by Design.
What do you want people to know about Lyme? Examine carefully and journal your symptoms (response to treatment, etc.), do online research especially at http://www.ilads.org including vector-borne co-infections, join online Lyme forums, do IGenex testing (www.igenex.com), find an experienced Lyme AND mold literate physician (s), and consider several treatment options as you begin this long journey to healing.
What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme? I don’t know how anyone can recover from this difficult illness without two things: 1) the love, care, and support of other people in your life and 2) faith in the Lord, Jesus Christ who loves you, sees your suffering, grieves with you, and will carry you through the ups and downs of this difficult journey. He is our true source of hope! When struggling with hours of seizures at night, He meets me there every time and comforts my weary heart, my weary soul, my weary frame. Sharing my faith with you is my reassurance that this experience won’t be wasted! I welcome your thoughts and would love to meet you, Gentle Reader, through my blog (www.justjuliewrites.com) or on Facebook at: Hope Beyond Lyme. Take care, Julie
Forbidden Fruit
It’s everywhere. I look in one area then into another and I cannot avoid seeing it. I go to the store and displays everywhere tempt my senses. I must be strong. I look forward as if I am wearing blinders (those “harness winkers” or leather patches that keep horses from looking to their peripheral vision) so I don’t stray from my mission. The forbidden fruit beckons. “No!” I will not cave.
It’s not that I can do this in my own strength, by the way. The cravings are too great. Every cell in my body has probably been affected at some level since I’m without the glucose and carbohydrates that provide energy to battle the infection raging therein. Oh you thought I was writing about something sinister, didn’t you? Nope. It’s an elusive fungus, partially protected in a mucous-y biofilm but not sinister per se. It is CANDIDA! And at level 3 of 4 levels, gut yeast is hurting me badly. The “forbidden fruit” includes actual fruit plus food containing any form of sugar plus any simple carbohydrate or starchy vegetable. This includes all grains, even the gluten-free kind. Now even several months into this this extreme diet I have yet to see the endpoint.
Now let’s add another layer: any food that is fermented, aged, seasoned with just about anything but salt, or at risk for trace amounts of mold! Evidently even walnuts and pecans can harbor mold in the folded areas of the nut itself. Leftovers in the frig for more than 24-hours can harbor mold. Black pepper can harbor mold. And the list goes on. Tonight I decided to sacrifice some more seasonings to try to prevent the side effects of consuming the wrong foodstuffs. The consequences have been severe: three and one-half hours of seizure attacks plus hours of recovery yesterday convinced me of the need for some more tweaking. I also stopped one of the medications that feels like it’s killing me. When a pathologist stated online that seizures change the matrix of the brain, well that woke me up again to the seriousness of this battle. Seizures can be a part of a level 3 Candida infection. Geez. And most people associate yeast with vaginitis. That was a cakewalk compared to where I am these days.
Yes, this is tough stuff. Yes, it takes total discipline, focus, endurance, and patience with the repeated setbacks. Chronic illness requires grace from one’s family, especially one’s spouse. I am grateful for a loving husband who relies more on the Lord for his happiness and peace than on me. He sees things from a hopeful place and speaks to the little improvements or the sweet moments between us no matter how small. His God-given strength is very humbling. The only way we are able to endure this is through the love of our Lord, Jesus Christ and the leading of the Holy Spirit. We believe that this is the Lord’s plan for our lives and that He is here with us no matter what happens. And if it is His will, I will be well someday. I will be able to put to use that awesome carbon fiber canoe paddle Steve bought me for Christmas! Such a gift of confidence from my beloved. I love my man!
The forbidden fruit of today have become the hedges of protection I need to keep me from getting worse. Just like the corrective events of life (those we bring upon ourselves from our own mistakes and those the Lord allows for His Divine purposes), they are not to be hated, feared, avoided, or teased. We must face that which is forbidden and directly choose otherwise, place a barrier (physical or mental) in the way of temptation, and simply go forth on a different path that leads to victory. Nothing else will do if we want to win. I did not dink around with my diet at all during Christmas and I still was very sick. Imagine if I had “cheated” on my survival diet. I would have not been able to visit with family for three consecutive days, cook for several hours at a time, and enjoy a delightful time of fellowship. Sure I “crashed and burned” around 8:00 p.m. each night. The sacrifice was worth the reward that was available to me. The reward was greater this year than last year at Christmastime. That’s cool.
From here the journey ahead is unclear. I will continue the treatment approaches I have described above yet do not know yet if any new medical approaches are warranted. I have an upcoming appointment with my Lyme and mold-literate medical doctor where we will review the difficulties I have had functioning these past two years. There’s another functional medicine clinic of interest that is 3-hours away . . . We sure will be praying for direction about all of this in the new year. Wherever the path leads I know the Lord is already there. I welcome His plan for my life that has created more joy than I ever could have imagined on my own. If that joy must come through serious illness then I would not want it any other way. Really. I’m just believing what He tells me, you know. Picture me and Steve in an outrigger canoe along a sandy beach somewhere warm . . . Yes, I can picture it . . .
Jesus is for the Wounded 
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