Through the Peaks and Valleys of Living With Chronic Lyme Disease

My story begins when I was a youngster, around the fifth grade of Elementary school. I was an adventurist kid, spending all day outdoors until that predictable call that dinner was ready. Usually I was building or maintaining my forts! Using the neighbors fence as one side of my fort and concocting ways of hanging sheets or blankets to make the other walls of my fort took a lot of planning and execution you know! It was my second home and I spent hours in my forts with lot’s of creepy crawling insects that bothered me none. It was around this time that I came down with a horrible illness that left me bedridden for over a month. The Doctor said I had Mononucleosis, which maybe I did.

My Dad was an avid fisherman and my family spent nearly every summer at Leach Lake in the great state of Minnesota. The long car rides always made me ill with car sickness. I was the only child of 7 that got car sick every time I rode in a car for more than 10 minutes. I did, however, always look forward to our family trips to Minnesota. That was time playing in the woods, enjoying the “catch of the day”, playing capture the flag, swimming in the lake and just being a kid. I remember many bug bites, especially those from the giant size mosquito’s in the northern woods of MN! They could devourer a person in less than three minutes.

I also spent 3 weeks every summer at a christian horseback riding camp. To this day, I remember my favorite horse, his name was Turk! These were some of the best times of my childhood but also could very well have been when I contracted Lyme Disease and co-infections. I struggled in school all of my life. I couldn’t fully comprehend what was being taught regardless of the subject and I dreaded reading a book. I became more of social person who excelled at dance, figure skating and synchronized swimming. This summer camp is where I was introduced to Jesus and initially invited Him into my heart to be my Lord and Savior. Though I didn’t fully comprehend this new love relationship that had just bloomed in my heart, this single moment in my life would prove to be my strength in times of weakness, my song of joy in desolate desserts, my anchor in turbulent waters, my best friend in times of loneliness, the protector of my mind and soul, my prince of peace and SO much more. This choice was the best choice I could have ever made.

At the age of 19, I set out on a big adventure. I moved from IL to the Bay Area in CA as I had an older brother living there. My Mother died when I was 14 and my Father was an alcoholic. I may not have taken this big adventure if things at home were different. My life in CA is where I grew strong in the Lord, had my baby and met my husband. It was meant to be. I spent the next twenty years working hard and playing even harder. One very memorable camping trip to the Russian River in Norther CA rendered me sick as a dog for weeks. It didn’t make any sense as I was feeling great prior to our trip and the person I was with wasn’t sick. I often wonder if this was the point of contracting Lyme Disease, although I didn’t notice a tick on me or take note of any rashes. I wasn’t looking for these things either, as I had never even heard of Lyme Disease. I’ve read that only 30%-40% of people with Lyme Disease recall seeing a tick or the classic bull’s eye rash on them.

Like many people with Lyme disease, I don’t know when I contracted it. I spent years going to the doctors for chronic sinus infections, one after another. I began taking naps in my car while at work and was generally fatigued most of the time.

In 1995, I was in a near fatal car accident. In a coma, I found myself at the gates of heaven and in awe of the peaceful white light that was surrounding me. I was being drawn into the light where I felt sure that I was going to see the face of Jesus. The doctors were not sure if I was going to make it. My life was hanging in the balance and I experienced a life changing meeting with an angelic presence, who had a message for me. The message was a bible verse,

“For I know the plans I have for you, declares the Lord. plans to prosper you and not harm you, plans to give you hope and a future”. -Jeremiah 29:11

The place I was in was extremely peaceful and I was not aware of my accident or any pain or injuries. I was calm and had no fear. I deeply desired to stay in that place!

It was not to be and over the years ahead, God kept his promise and clearly showed me His plans for my life. Though the times ahead would prove to be extremely difficult and I often strayed from the God who loved me, He was still my shepherd keeping a watchful eye over His wayward child. God took me along paths where He highlighted my need for Him, placing me in situations where my strengths were irrelevant and my weaknesses were glaringly evident. Through the dessert marches, He drew me closer and closer to Him. I would discovered blooming flowers of peace in the most desolate places. For these things, I am grateful. This was His plan, I am sure of it!

Due to the brain injury I encountered, I was given massive doses of steroids to halt my brain from swelling. It was either steroids or death. Due to the steroids, my immune system was weakened and this is when Lyme disease exploded into every fiber of my body, unbeknownst to me and regardless of when I contracted it.

I was on disability for 6 months and recovery was slow going and difficult. I struggled with physical therapy and struggled with movement in general. I did months of biofeedback in hopes of regaining brain function. I was increasingly feeling sick and my body was racked with pain and fatigue. It was as though I had to teach my body how to do things again. My brain was slow and increasingly having difficulty with word processing, putting sentences together and staying focused. The other symptoms that started rearing their ugly heads were severe neck and back pain, vertigo, severe balance issues, weakness, depression, pounding headaches, memory problems, losing peripheral vision, anxiety and fear of leaving my house and fear of driving, or being in a car. This was NOT recovery.

After numerous attempts of getting help from the hospital that took care of me after the car accident, I started venturing out to other Doctors in hopes of finding out why I was having all these symptoms and not recovering from the accident. My quest started with seeing a Neurologist who ignored all the physical symptoms and recommended an antidepressant as a solution. I saw several MD’s that had no answers for me. The list of Doctors goes on and on…

Though I was still symptomatic, it was time to return to work. I ended up getting a great administrative job at a high tech company with an even greater boss! An angel of a boss who I grew to love because of her compassionate heart. I made good money and the job wasn’t too demanding and that is exactly what I needed upon returning to the work force. This job and my boss were a gift from God and an answer to prayer!

In 1996, I was overjoyed by the surprise of my baby daughter! Though I was to be a single parent, there was NO doubt on the birth of my child. I did well with pregnancy. I felt better while I was pregnant, not great, but better. Was this part of the “plans I have for you”? Indeed it was! I had been given the gift of motherhood, for that I am eternally grateful!

I met my husband Tom in 1998 and we married in 1999. That was quick!! It was love at first sight. On our first date, we met at church and then went for coffee. On the way to coffee, I asked him if it would be OK to put the seat back and take a little nap!! “No problem”, he says. We laugh at that often as he didn’t know just what a napper I would be. That was just a little preview! My husband became my strongest supporter and I would not be where I am today without him. He is one of God’s greatest gifts to me! Was this part of the “plans I have for you”? Of course! That verse that was placed in my heart was really resonating and I started to see very clearly that God did have a plan for my life and thus my returning to life on earth was no accident.

Shortly after marriage, we moved from the Bay Area to Livermore, CA. I’m trying really hard to be a good Mom, a good Wife, a good Homemaker and a good Step-Mom… it wasn’t happening. I was sleeping 14 hours a day, extremely fatigued, emotionally depressed, in chronic pain and overwhelmed with my new life. I found a new Primary Doctor. After a MRI of my spine, this Doctor exclaims, “I know what is wrong with you”! The best words I had heard in years! He proceeded to tell me that I had a severally herniated disc in my neck. He recommended that I have a C6-C7 fusion as the disc was severely compressing my spinal cord. After 2nd and 3rd opinions, we decided to go ahead with the surgery. More steroids… and again, the recovery was slow. I was extremely disheartened as the surgery didn’t help me feel any better, other then knowing the herniated disc wasn’t pressuring my spinal cord. This Doctor also diagnosed me with Fibromyalgia.

In conversation with my sweet sister-in-law, she suggested I see her doctor. She too was ill for many years, without any answers, until she found this Integrative Doctor that diagnosed her with Celiac disease. At that point, I was ready to see any doctor in hopes of finding out what was wrong with my health. I went to see her doctor and after an initial consultation, he said he thought I had Lyme Disease.

What!? Lyme Disease? I had never heard of it. I trusted this Doctor, unlike all the previous Doctors, he seemed genuine and really listened to me. I accepted his diagnosis, although I had no idea what it meant. He informed me that in a few weeks, one of the top Lyme Specialists in the country was moving into his office. I had blood drawn for the Western Blot test to confirm the presence of Lyme antibodies. I was so relieved to finally know what was wrong with me! I had no idea what treatment would entail and how long I would be in treatment. I also had NO idea about the toxic overload, candida issues, or herxheimer reactions. I was just, at the time, so relieved to finally have an answer!

Before I could see this Lyme Specialist, my family took a trip to Hawaii and I was sent with a bottle of artemisinin. I was taking maybe 4 a day and I started feeling better than I had in years. I also think the warmth and humidity was helping me release toxins through sweat. We had a great vacation!

Upon returning, I went in to see the Lyme Disease Specialist and she confirmed that I had all the pertinent bands for Lyme-positive on the Western Blot. I recall her telling me it will take between 3-5 years of treatment. Over the next three years I tried many different combinations of antibiotics, but could not tolerate many of them. The herxheimer reactions in the beginning were extremely tough. There were nights when I wasn’t sure if I would wake up the next morning. I clung tighter and tighter to the Lord.

Pressing 0n, I started making progress at about year 4 and I felt like I was in remission. I felt well enough to consider moving to CO and that’s what we did. Shortly after moving to CO, I started to feel ill again and there was something new. I could barely walk on my legs as they were in so much pain. I then tested positive for Bartonella and Myclopasma. Initially I was diagnosed with Lyme and Babesia. Now Bartonella and Mycoplasma? I don’t know if I was reinfected or if I had these co-infections all along. I do believe the climate change and elevation had something to do with it, but I started back sliding. Traveling to CA every three months to see my LLMD was an enormous task. I remember having several meltdowns in the airport as I was disoriented and to weak to manage my luggage.

Where I am Today

After 10 years of antibiotics and other various treatments, I am roughly 70% better than I was when first starting treatment. I have also used various alternative therapies, supporting therapies and have made some big diet changes. One way I plan on supporting and sustaining my health is through a more natural approach, healthy eating and healthy life style practices. These steps have all been crucial to regaining the amount of health that I have. Probably more importantly, I have adopted a great change of mindset. I am NOT my disease and life with Lyme Disease is but a fleeting moment in time compared to eternity. I know what eternity holds for me and I will make the best of my life until that day comes, one day at a time. I no longer focus on what I cannot do, but find joy in the simple things in life. I do not focus on every symptom I have, but rather focus on living a contented and functional life the way I am. I also focus on the one who sustains me and my first true love, Jesus Christ. He has given me many glorious gifts and breaths His life into me daily. His mercies are new every morning!

What has Helped me to Regain Health

First and foremost, I will be eternally grateful to my LLMD. She is a brilliant and very compassionate woman. Antibiotics, no doubt have helped me to regain much of my health. I am starting to focus on more natural approaches going forward. I will stay on a low dose maintenance antibiotic regimen while adopting a more holistic lifestyle and incorporating more natural treatments to maintain and further my health. Living a more balanced life through prayer, education, exercise, diet, nurturing my own body and having healthy relationships has become a priority, not an option.

I am a big fan of using a FIR Sauna and have done so regularly for the past 5 years. I believe I would not have been able to tolerate antibiotics for as long as I have without the regular use of the FIR Sauna. It has been the best health investment I have made. I use Glutathione in a liquid form to further help with detoxification. I will also be incorporating various detoxing “cleanses” through the Global Healing Center and other well known health institutions.

I take quality supplements and herbs. It has taken me years to figure out the most effective regimen for me. I absolutely believe I am a much healthier person because of them. One way I know this is when I miss a few days, I don’t feel as well. I write extensively about supplements and herbs on my “supplements” page. Many have been recommended by my LLMD. Others, I have learned about through the Lyme community and research. Trial and error has been part of the process. On occasion, I get vitamin infusions at my LLMD’s office. I am always left feeling refreshed and energized by them.

Diet has played a key role in regained health. I went gluten free about one year ago. The effects were felt almost immediately. I had less abdominal bloating, I lost weight, I noticed less stomach aches and more energy. I am currently studying at the IIN! I believe diet alone can be the difference between health and sickness in general and there are more studies linking chronic illness to poor diet. I am working towards the best diet possible and looking forward to more health gains through optimal eating. I have started juicing and I look forward to these wonderful vitamin infusions daily.

Exercise has always been a major struggle due to muscular skeletal pain and stiffness and lack of energy. I am pushing myself to walk at least two times a week. I have found that it is really motivating if you like the area you are walking in. With that, I drive to the beach for some natural Earthing and walking. Walking through a pretty park is also quite pleasant. I’m progressively increasing the number of walks I take and also the duration. There was a time where walking around a block was too exhausting. I have also been doing restorative yoga on a fairly regular basis. I always finish feeling very relaxed. I do experience increased pain the next day, however I’m expecting this will decrease with more practice and time. Moving increases oxygen in the blood stream and helps to keep our joints more flexible.

Prayer and a positive mindset have worked wonders. I am strong in my faith and the Lord is my rock. He is also my Prince of Peace, my Wonderful Counselor, my Defender, my Healer, my Light in the Darkness and the Way, the Truth and the Life! He is my everything and I take great comfort in Him. If I am focused on all of His wonderful ways, I cannot sit with a negative mindset. Reading my daily devotional is how I start my day and prayer is how I finish it. It is a great way to live life and keeps me grounded.

I still have bad days, but many more good ones. This is a stark contrast to the early days of treatment. I still live with daily chronic pain, fatigue ( to a much lesser degree), cognitive challenges and other symptoms that wax and wane, but nothing compared to years ago. I have come a long way and you can too!

I am still researching and praying for a cure and making every effort to become a healthier person because I want to make the most of the time I have on earth. I have faith that a cure is coming! Lyme awareness is on the rise. With IBM commercials talking about Lyme disease and LD plastered on the Jumbo Tron in N.Y. City and the Daytona 500. These are huge leaps towards awareness. Our day of healing will come!

With my education at the IIN, I am hoping to be able to help others who are struggling with Chronic Lyme Disease and other chronic diseases in a very practical way. I deeply desire to be used by God to encourage, support and share what I have learned in the past 10 years relating to chronic illness.

Philippians 4:6-7

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus.

Source of Through the Peaks and Valleys of Living With Chronic Lyme Disease by Jennifer L Mortensen – author of Through the Peaks and Valleys of Living With Chronic Lyme Disease article

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