Imagine having everything you had planned and worked towards put to a halt. All social ties, volunteer communities, education, traveling, even dining out becoming a burden, and the simple task of climbing a stairway seeming almost impossible; that is what Lyme Disease does. It takes the simple things we value in our lives, and places it in a harbor due to illness. It is purely a chronic disease whether one has it for more than ten years or less than two.
I was told I coped faster than most from my specialist. I feel blessed and have deep gratitude of knowledge coming from a background working in the medical field for over twelve years to know enough, if I did not advocate for myself, research, and take action for myself- no one would. I understood how Lyme Disease worked, and how the insurance companies do not claim Lyme as a “real disease”. I must admit, there is nothing worse than knowing something is not right inside you; even though you are doing all the right things to remain your healthiest; you cannot prove it. I found myself in a conundrum.
I took thirteen years of classical ballet as a child, one year of jazz and tap each. High school, I remained athletic and took cross country track, aerobics, strength training and was top in my game. After dislocating my left knee at age eighteen I found yoga, and never looked back. I cured my pain, began living an even more balanced lifestyle and plunged into holistic health. I always felt connected to my body, knew how to decipher between growing pain, and a warning.
I was raised to know that pain was a sign something is wrong, and not to medicate unless completely unbearable. Besides being a military-brat, I feel classical ballet taught me how to put up a good front. Smile and be graceful, while your feet are crammed into tight pointe shoes; do that on your tippy-toes and anything seems easy! That’s the purpose of sports or any discipline. Focus on the goal; get past the moment of discomfort, and eventually one achieves one’s goals.
We all are busy working towards our goals, imagine working through your day, and suddenly feeling symptoms which seemed significant to be concerned of, only to disappear, and seemingly coincidental. Most common colds, or minor injuries are just that; coincidental. Most illness and colds heal themselves then disappear. Mine however, had no reason of cause and had become never-ending.
Age 29, I found my body bruised, sprained, with achy joints. Mind-fog began, with eyes sensitive to day light, unsteady hands, and skin breaking out in cysts. Headaches occurred along with, pulled muscles, a constant upset stomach, and skin so sensitive to touch; even my belt buckle became an irritant.
Thought I had carpal tunnel, Rheumatoid Arthritis, or some sort of inflammatory disease. I worked with a primary care physician, or local E.R. to test for answers. You see, insurance claims must have a diagnosis in order to continue paying for tests. It puts the medical provider in a bunch, for one cannot test for what is not presently revealed. I was an active, health conscious, young adult, with no family history, and no lifestyle habits for concern to test any further.
Taking action into my own hands even more, I asked some Lab tech friends to test my blood for Lupus, Lyme Disease, tumor markers, anything related to my symptoms. I knew something was not right, although I was told there was nothing to be concerned about.
Years past, I structured time well. Working twelve hour shifts at a hospital; rotating days/nights. I volunteered; directly after work. Socializing with family and friends was balanced. Symptoms reappeared then disappeared, and it all seemed aligned with whatever had been planned that day. I had regular checkups, and saw an acupuncturist, took up massage, Roman hot baths and saunas at spas, ate gluten-free for a year and even saw a dermatologist to clear my skin. I was still concerned about my health.
August 2012 started with sudden new symptoms of night sweats, hot flashes, pulling over to vomit on the side of the road from vertigo. Stress became difficult to manage; even the simplest tasks were challenging. I felt my skin crawling, combined with extreme fatigue, speech slurs, unending thirst for water, and extreme cravings for salt. The meniscus in my left knee tore repeatedly until it had to be casted for two months; which had not been injured since age eighteen. Migraines brought on blurry vision.
Election Day 2012, I got news I had Lyme Disease. Acting fast, I was familiar with the Disease knowing of patients diagnosed with it, and assumed it was curable. Researching on the internet and through Youtube became another daily routine. I had run blood tests for Lyme and had two false positive tests six months apart within a year.
Three weeks of antibiotics made for three weeks of pain. I worked through the process, supervised two labs in a physician’s office, and started to feel better, until I had an extremely unbearable migraine accompanied by more blurry vision. Imagine leaving work, sitting down in your driver’s seat, as you speed-dialing your parents to say hello- then your vision turning black.
My vision was lost for twenty-three minutes. As tears rolled down my face, I practiced meditative breathing with my parents on the phone. I locked myself in my car, sitting alone in my own darkness-except for voice of my parents comforting me. It was the longest twenty-three minutes. Being witness to how the mind and body are so vastly connected; I focused on my consciousness and everything returned to normal.
A homeopathic found my disease. Lucky for me, he worked at a community health center, which had urgent care. Once my eye sight returned I drove to the urgent care, demanded to have my blood tested once more, along with my eyes checked. Once more nothing was wrong; I was told I was cured from Lyme and probably just over-reacting.
The LPN who took my vitals shared she knew a specialist and that she herself was a survivor of Lyme. Attempting not to undermine the physician servicing me, she printed out a contact number for a Nurse practitioner specializing in the treatment of interstitial cystitis, tick-borne diseases, and holistic care. My search was over. I relapsed worse than before by Christmas. College courses were placed on hold, and my socializing to a minimum.
February 2013, I learned my confection was Hemo-Bartonella found from ticks as well. I started treatment slowly on antibiotics and more vitamin supplements; fifteen pills a day. Willingly worked up to five more antibiotics a day, slowly weaned of the meds and replaced each with herbs. Antibiotics helped me feel more like myself, I felt dependent on them, for if I missed them within a few minutes- my symptoms returned.
Being on the meds made my complexion change four shades darker, the gums in my mouth turned dark gray and my family assumed the medication was the death of me. I remember my homeopathic telling me he did not know of anyone being cured without antibiotics, and I would need to seek a specialist. From what I had witnessed on my journey, it seemed true, blindly I followed the process.
I had no choice not to work. Coverage to help with medical costs was available, however I did not qualify for Medicaid, and the health insurance I had actually did cover my bloodwork. I worked whatever hours I could and sucked it up for it was my payment for my health, and I could not afford to live on disability. Most days I worked and could not feel anything below my knees. There were fainting spells, working with numb hands and feet, all during twelve hour rotating shifts in surgical rooms assisting physicians as a surgical tech. Remaining focused until off the clock was key. Once it was time to go home, I would collapse, regroup, and prepare to return to work again.
Never felt rested; my sleep cycle was non-refreshing for a year and a half. I slept on days off until personal encounters were due, and joked with my boyfriend to prepare for “zombie heather” on days I felt the worst. You know someone loves you when they do not mind wiping your face or wherever vomit may roam. I started dating my boyfriend two months into treatment once I found my specialist, and am grateful for his loving support.
I remained open about my illness, but never wished to be seen as a victim. Most nurses and coworkers did not seem to be educated in the full knowledge of the disease, and a few were completely compassionate when they learned I had Lyme. Communication creates understanding and prohibited my pride. Plus explained constantly popping pills into my mouth, or rubbing my feet.
Pain is caused by the release of endotoxins from dead Lyme Disease bacteria in tissues and in the bloodstream. These toxins in the body are released by heat. Basically the bad stuff dies and all feeling as if your body is dying along with it. All and any side effect returns, making one feel hesitate to detox again. I fought through it. Each week, each month, less mind fog, etc. As I grew stronger, I started doing as much as I could daily towards my health. I was told I needed to keep exercising if I did not I would lose my ability to function normally. Five minutes of yoga, pushups if I could, walking, whatever I could manage.
Summer 2014 the Lyme antibodies were controlled. I began to feel more rested; like a normal human should. Rebuilding my immune system and gut flora was the next challenge. Suddenly extreme cramps, fainting daily, plus mind fog returned, and I assumed again it was a process of healing. Nothing helped, so I went to my OB/GYN, who said again I was fine, had a healthy evaluation- nothing was wrong. If I had not demanded to have an Ultrasound, the cyst on my left ovary the size of a tangerine would not have been found.
Switching to part time work to heal, I changed to a Vegan diet, waited for eight weeks for a second Ultrasound. Thanks to the light, the cyst was completely undetectable, and my adrenal fatigue was no longer present. The new diet took away the lasting inflammation in my joints I could not ease. Meat seemed to no longer agree with me, once I became sick. My specialist expressed it was okay to experiment, go with what feels best. We openly worked together researching ideas, and she allowed me to advocate with suggestions towards my health. Her knowledge tremendously guided me.
My childhood illnesses might be Lyme related. Being a military-brat residing throughout the northern East coast provided constant mosquito bites head to toe the size of silver dollars( Mosquitos also carry Lyme disease). Blood work proved re-infection with a tick bite in my adult years. I never had a bulls-eye rash, but a bruise on my right upper thigh. I assumed it was due to catching a falling patient in a group home, while working in West Virginia late 2009 when he knocked into the same area. Coincidentally, I never saw a tick, and the bruise disappeared within hours.
It’s a blessing to feel vital again and in process of getting care from an Immunologist who works with an organic chemist begins. The use of standardized, high concentration botanical extracts, heal and get one back to feeling even more like themselves. I currently only take two herbs daily, and a few vitamin supplements. In a few months I will be clear of any need for herbs, and continue to protect myself from becoming re-infected.
Each day, is a step forward, and our emotional state affects one’s health. I started mediating with a guide; sometimes I still feel numbness in my hands and feet, and am told my nerves are healing. Most symptoms are gone, but I still practice all I have learned and must for a lifetime to come. On my journey, what worked best with my body chemistry to heal, was the use of herbs; not antibiotics. I do believe the antibiotics killed the bacteria to a degree, and feel both Western and Eastern medicines work well together. However, who is to know what could have been if I had started to use only herbs sooner.
Lyme Disease is a very sneaky disease and shows its self differently in each individual just like cancer or HIV. I hope to become a holistic practitioner (instead of a surgical physician assistant) of some sorts and have as close a relationship to my patients as I do with my Specialist today. Sharing the knowledge in order to help heal and inspire others is vital due to the lack of acknowledgement needed to research Lyme disease. Doctors have no tools or proper education to combat this growing epidemic. The medical field is slowly changing, but will it be effective for those suffering in darkness?
I will forever be thankful for those who were in place in my path to help me along my journey of healing; each day I and many other suffers are still healing. Push past your fears. Appreciate each moment you have. Never stop advocating for yourself and others; use your voice and do not take no for an answer. Do not doubt yourself, but mostly- do not give up hope.