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
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