Montgomery County, MD
Infected: Summer 2009
Diagnosed: November 2012
Current health: “Each day is a step forward. Most symptoms are gone but I still practice all that I have learned and must for a lifetime to come.”
Do not doubt yourself, but mostly, do not give up hope. –Heather F.
Lyme disease is perhaps even more surprising when you think you know what it is and how to treat it. Heather, a young PA (physician assistant), had years of professional experience dealing with patients who had been diagnosed with Lyme but still had no idea how the disease would wreak havoc on her own life when she too fell prey to the disease. Here, in this excerpt from a longer story first shared with Suffering the Silence, she shares her observations about the disease and her trials getting it controlled. You can read her full story on Suffering the Silence.com, a community site dedicated to creating greater awareness and community among patients with chronic illnesses.*
“Imagine having everything you had planned and worked towards put to a halt. All social ties, volunteer communities, education, traveling, … even dining out became a burden, and the simple task of climbing a stairway became almost impossible. That is what Lyme disease does.
“I was told I coped ‘better than most’ by my specialist. Coming from twelve years practice in the medical field, I feel blessed to know that if I did not advocate, research, and take action for myself, no one else would. I understood how Lyme disease worked, and how the insurance companies do not recognize Lyme as a ‘real disease.’ There is nothing worse than knowing something is not right inside you. Even though you are doing all the right things to remain healthy, something is wrong, you simply cannot prove it.
“I was raised to know that pain was a sign something is wrong, and also not to medicate unless that pain was 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 aims.
“At age 29, I found my body bruised and sprained, with achy joints. Mind-fog began. My eyes were sensitive to daylight, my hands unsteady, and my 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. I thought I had carpal tunnel, rheumatoid arthritis, or some sort of inflammatory disease. I worked with a primary care physician and local ER to test for answers. 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 passed. 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. But I was still concerned about my health.
“August 2012 started with sudden new symptoms of night sweats, hot flashes, and 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. Migraines brought on blurry vision.
“Election Day November 2012, I got the news that I had Lyme disease. I was familiar with the disease and assumed it was curable. Three weeks of antibiotics made for three weeks of pain. I worked through the process 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-dial your parents to say hello and then your vision turns 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 the voices 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. Once my eyesight 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 that she knew a specialist and that she herself was a survivor of Lyme disease. 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. In February 2013, I learned my confection was hemo-Bartonella, transmitted by ticks as well. I started treatment slowly on antibiotics and more vitamin supplements — fifteen pills a day.
“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. 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.
“By 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. I 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.
“It’s a blessing to feel vital again. 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. 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 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 of some sorts (instead of a surgical physician’s assistant) 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, am still healing. My advice? 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.”
*Excerpts from Lyme stories have been shared between Bay Area Lyme Foundation and Suffering the Silence as part of an ongoing partnership between the organizations and with the permission of the authors.