The New Hope Beyond story began after kayaking in the Cedarville Reservoir in Leo, Indiana on October 11, 2011. What a great time I had with my husband, Steve, and the Fort Wayne Kayaking Group including enjoyment of Louise’s fabulous cookies afterwards! The only problem with our paddle that night was a few sanitary mistakes I made that led to a devastating bout of hepatitis, trip to the emergency room, and over a month of wretched illness. The Lord alleviated my symptoms enough to enjoy a family trip over Thanksgiving weekend then what would become a severe illness intensified thereafter and never really abated. I struggled to function in my work as an Occupational Therapist in home health care and eventually would need to take an extended medical leave from my profession.
By January of 2012, my Doctor was looking for other causes of the ongoing illness. He identified Chronic Lyme Disease largely by exclusion and clinical presentation; I may have had it for years! Treatment for Chronic Lyme Disease began with oral antibiotics and immediately I was exceedingly miserable. By February I was no longer able to work in my profession as an Occupational Therapist. We invested in Rife technology coupled with a lower dose of antibiotics, compounded medications, and specific pharmaceutical-grade supplements. Daily seizure attack episodes began shortly thereafter and quickly escalated to an unbelieveable level. (See my You Tube Channel for videos.) A year later in January of 2013, Steve and I learned that mold in our home was likely contributing to these neurological complications. My severe reactivity required moving 13 times over 76 days while we fast-tracked the mold remediation of our home in three months so I could return to living there! It turns out that the blue-green algae in the Cedarville Reservoir and mold exposures are both considered “biotoxins” and contribute to Chronic Inflammatory Response Syndrome (CIRS). Then as 2014 began the big focus was on resolving a systemic Candida infection with even more treatments and dietary restrictions. Sish.
2014 ended with the bombshell news that underlying all of this illness was mercury toxicity!!! I investigated chelation then pursued the best mercury speciation testing and detoxification protocol I could find thanks to my chiropractor, family practice physician, and Quicksilver Scientific. Removal of 2 infected and painful, root-canaled teeth followed. While the journey of recovery continued to be difficult five years down the road, I recognized the many cool little life lessons along the way that have served to grow my faith in the Lord no matter what may happen to me! And with the potent neurotoxin burden of mercury (and soon other heavy metals) down, my beloved Steve and I were hopeful that I would soon GET WELL!!!
The Lord, Jesus Christ provided for our needs during this time and directed us through Steve’s leadership, love, and care. The tremendous trials brought Steve and I closer to each other and to His throne of grace. When the isolation of CIRS got unbearable, He brought me a local Lyme Support Group, Skype Bible Prayer Group, startup of the Quicksilver Mercury Detox Group on Facebook, new friends, my own eBook (Hope Beyond Lyme: The First Year), and connections with others online (instead of in-person) including through this blog! Somehow I became an Advanced Master Gardener along the way. A new hobby kept my hands busy when I couldn’t sleep and led me to open then sell my jewelry shop on Etsy called, Trinity Jewelry by Design. I helped plan gardening projects from home and made jewelry overnight when I could not sleep. Although I attempted to write a second eBook (Caring for the Sandwich Generation at Home) and invented a unique home safety product for Two Step Solutions LLC, the severity of the complications rendered me bed-ridden most of the days of 2015. After many fits and starts over the next 6 years including switching my focus to a Home Safety Hotline, I eventually realized that I needed to let go of my 29 year profession as an Occupational Therapist. I closed the LLC in February of 2021. The process was painful. I will always be an OT in my heart!
January of 2016 began the time to revisit the diagnosis of Chronic Lyme Disease with exceedingly expensive IV antibiotics, experimental treatment for a fungal infection (protomyxzoa rheumatica or FL1953), and genetic coaching by a naturopathic physician. I battled shingles during the Christmas season, was hospitalized, then had to stop the IV antibiotics by January of 2017. Within a couple of months treatment began for three viral infections per my lab work then for parasites, oh my! Gratefully I was tolerating all of these interventions a bit better than when this journey began over 6 years ago thanks to the nutrigenetic interventions; I made progress in many areas of my overall health. In January of 2018, longstanding TMJ and temporal mandibular disorder issues appeared on my radar as I discovered how cranial nerve impingement can contribute to “movement disorders, especially for a related disorder called dystonia;” they are largely alleviated by specialized dental appliances. Learn more about our pursuit of this new avenue here.
By June of 2018 the specialized craniomandibular appliances were helping! We praised the Lord for what appeared to be a true process of healing at last! The wretched episodes were initially down about 80% making the simple act of lying down less of a trigger; reactivity had further improved, sleep/wake cycles became more reasonable, and my activity level slowly increased for the first time in SIX YEARS! Simultaneously caregiver responsibilities for my Aunt Lori increased, posing a challenge to my new gains in health. The stress and flare-ups were crushing. Even so, my beloved husband, Steve, and I remained grateful to the Lord for His sustaining grace-and-mercy through the most hellish years: His provision, strength, and presence sustained both of us through my darkest hours as well as in the light of the day. Steve (aka River Bear!) remained my faithful hero and partner throughout this incredible journey. Along the way just sitting in an outrigger canoe with him or having a little bit of dirt under my fingernails from a wee bit o’ gardening encouraged me tremendously. Sadly, the improvements did not last despite adjustments in the specialized dental appliances. Something was missing. I felt lost and empty. What now Lord?
2019 UPDATE: My primary Doctor diagnosed me in January (noticing a trend here of new directions at the beginning of a new year?) with a serious autoimmune movement disorder then had little direction for my lifelong care. The end result could lead to becoming wheelchair-bound. I needed more answers before accepting this diagnosis! More of this change of course is documented HERE, HERE and HERE. I found the best Doctors in the country and scheduled an appointment in the Autoimmune Clinic at Mayo Clinic in Rochester, Minnesota. After 9 days of consultations and extensive testing we learned 2 important things: my local testing was considered “garbage” and two important diagnoses were wrong! I had flipped from hypothyroidism to hyperthyroidism and had been taking too much thyroid medication for the past 30 YEARS!!! A drastic change in my thyroid medication began turning around over 6 symptoms within a week, the most significant of which being a permanent reduction in the daily seizures. Over a month later I was more confident than ever that I was on the road to recovery at last! Praise the Lord!
Then on October 23, 2019 I noted that while discontinuation of thyroid medication and the completion of a Functional Movement Disorder Program at Mayo Clinic had their benefits, the convulsive episodes had slowly increased again. Our spirits were crushed! On September 8th while filing some records, I noticed the finding in a CT Scan dated 12.10.18 and again 7.4.19 of a pancreatic cyst. Interventional endoscopy was recommended and not done. This finding was lost to follow-up when a hiatal hernia was diagnosed in December of 2018. The gastroenterology team missed it! You just don’t mess with pancreatic cysts! So after a whirlwind of diagnostic tests, I completed more labs and an endoscopy ultrasound with fine needle aspiration by a gastroenterology oncologist. The fascinating part that kept me from losing my mind over the risk for CANCER was the concurrent and longstanding issue I had balancing my blood sugar. If the cyst was an Insulimoma it could explain the convulsive episodes. In the end I was diagnosed with a pre-cancerous IMPN that requires ongoing surveillance. (I went through a similar process of evaluation in 2021 landing with a plan of ongoing surveillance with kidney cysts, swelling, and a stone. Oy vey!) Just more plot twists to manage and dead ends for the cause of the convulsive episodes . . . . that continued but averaging only 6 days per week instead of 7. That was good?
INTO 2020 and BEYOND: Sooooo, 2019 ended with a re/mini-flare of shingles, confirmation of 2 additional viral infections, another near-death experience, the stress of the holidays, and the workup for pancreatic cancer OH MY! I was more than exasperated with all of these battles of ongoing, serious illness yet finally overcame Satan’s lie of suicidal thoughts that came to a point of decision in October: I WILL believe in the promises and hope of my Lord, Jesus Christ even if this battle is never won in my earthly lifetime. I will be well when my Lord ordains it; He has and will continue to help me cope per His perfect purpose and plans for me.
I did seek IV ozone with medical laser treatments in 2020 from an Osteopathic Physician and revisited a cardiology workup as well. The latter yielded a diagnosis of autonomic dysfunction and a further tweeking of my treatment plan. Another infected tooth became history in April which eventually brought more relief and fewer triggers of seizure-attack episodes related to inflammation of the trigeminal nerve. 2021 brought greater insight into the role of inflammation of the cranial nerves, especially the trigeminal, glossopharyngeal, and vagus nerves in this chronic illness. For the past 8 years, I have never been able to irradicate a MARCONs infection in my sinuses (per the protocol and Practitioners I saw trained in the Dr. Richie Shoemaker of CIRS). Pursuing newly compounded treatments discovered via my relentless research has led to improvements never seen before! The results confirm the interrelationship of the cranial nerves to neurological dysfunction centered in the brainstem and why the craniomandibular brought improvements that were not lasting nor curative of the convulsive episodes. We still needed to ameliorate the root cause. Even finally treating the daily headaches and migraines at a local pain management clinic has reduced triggers of my worst symptoms! Relentless pursuit as unto the Lord of root causes is bringing hope for better tomorrows, perhaps set in motion by a biotoxin infection that started in October of 2011. What a journey!
So I’m hanging in there Gentle Reader, by the grace of God and my beloved Stevers. Lord willing I am not only going to get better but have a renewed focus for my life too. Actually, the latter has already begun. Yay God! JJ
At some other life-changing points in my life, the Lord gave me these promises from His Word that have remained my benchmarks for life:
Jeremiah 29:11 (NIV)
11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Romans 8 (NIV)
38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
Philippians 1:12 (NIV)
12 But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel.