By Lia Gaertner
In July 2013 at age 41, I reunited with childhood friends and we ran the Tough Mudder race (eleven miles of Army-style obstacles with a fifteen hundred foot elevation change in the Sierra Nevada mountains). At the finish line (after four hours!), I felt giddy and ready to go dancing. Mario (the shirtless one in the photo) wanted to go soak in a hot tub. Ironically, he is the ultra-marathoner, regularly running 100 mile, 24 hour races across mountain ranges; whereas, I am recovering from years of undiagnosed Lyme disease and co-infections…infected by two ticks from the two coasts of the United States.
I was diagnosed with Lyme disease and babesiosis in 2008 after ten years of misdiagnoses. I have been recovering ever since, and running the Tough Mudder was a feat perhaps more significant for me than for some of my teammates (although one is in remission from lymphoma, so I think we understood one another on a deep level). My five year healing journey has been better than my previous ten year struggle to get properly treated and diagnosed, but unfortunately, my journey through years of misdiagnoses is very typical of people with Lyme disease.
In 1997, after growing up in Oakland, California and studying environmental science at U.C. Berkeley, I decided to pursue my graduate education in ethnobotany on the East Coast. I turned down Yale and Columbia to attend Cornell University in Ithaca, NY, because the Utne Reader had just voted it “America's Most Enlightened Town”. I went to Marmot Mountain Works in Berkeley, bought myself a Himalayan trekking jacket, and then packed my bags. I arrived in Ithaca on a hot, humid August day. I walked to the gorges, for which the area is famous, and stood in awe of the waterfalls, lush forest, and shale fossils. That was the first of day of a thousand I spent in those forests, both recreating and working.
As a graduate student at Cornell, I taught forest ecology and other science classes, frequently taking my students on field trips through the woods. I also did field research, traveling all over the backwoods of the East Coast. At that time, upstate N.Y. was the most Lyme infected area of the U.S.A. Yet no one ever told me to be wary or to check myself for ticks at the end of the day in the field. I was working with forest ecologists, epidemiologists, and ethnobotanists, but no one was paying attention to the tick-borne diseases all around us. I took a class on alternative medicine and we discussed many sources of chronic illness, but never tick-borne diseases.
A year after moving to Ithaca, I had ‘the flu’ and then later began experiencing heart palpitations, arrhythmias, trouble catching my breath, and interstitial rib pain. The resident physician at the Cornell Health Center heard a loud, clicking heart murmur and insisted that I must have had it for years. Why had no other doctor heard it if it was so loud? She had no answer but referred me to a cardiologist- the first of many who gave me varying diagnoses from mitral valve prolapse, premature atrial contractions, mitral valve regurgitation, and pleural edema. I then asked the same resident physician about the rib pain and the trouble catching my breath, but her only answer was ‘stress’. Although I denied feeling stressed, she sent me to a stress reduction classes where we meditated while focusing our gaze loosely on our thumbs. I knew the physician was wrong and went to the library to do my own research. Since I had just taken several trips to rural Ecuador and Guatemala for research, I thought perhaps I had Chagas’ disease, which comes from a tropical bug bite and manifests cardiac symptoms such as endocarditis. However, my doctor thought that was unlikely, so I dropped that hypotheses-- but I was so close!
Over the next ten years, I finished my graduate degree, married my boyfriend from college, returned to California so my husband could attend medical school, and had two children. Along the way, my health deteriorated. Previously healthy and athletic, I proceeded to develop an odd cluster of health ailments such as cardiac abnormalities, swollen lymph nodes, rib pain, hyperaesthesias, hormonal disregulation, environmental sensitivity, severe anemia, anxiety, insomnia, poor memory, fuzzy thinking, intolerance to alcohol, bruxism, word-switching, appetite irregularity (starving one minute and nauseous the very next), difficulty modulating temperature, mold sensitivity, clenched hands and feet, and more. I would report all of these strange symptoms to my husband and my doctors but they could find no answers. However, because I am tough, I just kept going.
In the summer of 2008, my symptoms suddenly became severe. I couldn’t move my neck or head, had air hunger, intense migrating joint pain, and severe night sweats. My husband had just learned about Lyme disease from a fellow integrative physician and recognized some of these symptoms. He called the doctor and implored him to see me. The physician asked me to describe my constellation of symptoms and before I was even finished, he said, “There is no other illness that causes that symptom picture. You have Lyme disease and Babesia, both tick-borne diseases. I’ll send you for testing.” I thought back to a camping trip we had taken two months previously in Mendocino County, California, an endemic Lyme area. I remembered a red circular rash that I had seen on my chest.
My lab results confirmed a Lyme and babesiosis diagnosis. My CBC and blood work was flagged all over and my neurotoxicity and inflammatory markers were sky high, while my white blood cells and iron stores were dangerously low. As my husband and I learned about Lyme disease and co-infections, we realized that those first cardiac symptoms in Ithaca were from a Lyme infected tick bite (infected ticks can be smaller than a poppy seed and often produce no rash) and that the second tick bite in Mendocino added a new host of symptoms that finally made the diagnosis more obvious (i.e. joint pain and night sweats). We realized that I was the unlucky winner of two infectious tick bites on two different sides of the USA. Lyme spirochetes and other tick-borne co-infections are caused by very unusual organisms, capable of evading the immune system and persisting at low levels, gradually altering their host and integrating themselves into all body tissues. The heart is one of their favorite places to hang out (along with joint collagen, brain tissue, etc).
My Lyme literate physician prescribed oral antibiotics such as Doxycycline, Ceftin, Azithromycin, intramuscular shots of an antibiotic called Bicillin, as well as Mepron- an anti-malaria drug used to treat babesiosis, and intravenous vitamins. I took approximately forty pills a day of supplements and herbs, went to acupuncture, therapy, osteopaths, homeopaths, and more. I experienced severe Herxheimer reactions where my symptoms increased and I gained new ones, such as extreme fatigue, nausea, and severely swollen and painful lymph nodes. Finally, after a few weeks of Mepron, my heart arrhythmias and palpitations disappeared, my joint pain improved, and the malaria-like night sweats stopped entirely. I stopped switching my words and regained normal appetite and temperature regulation. I consider Mepron central to my recovery- even though it costs $700 per bottle, is seriously hepatoxic, and is literally the color, consistency, and taste of bright yellow paint. After a year of treatments, I was still tired and achy. When my physician was about to put me on IV antibiotics, I instead decided to try a week long green juice fast, complete with colonics and wheatgrass enemas. Shortly after the end of the cleanse, I felt better than I had in years. That was the final liver cleanse that I needed to purge the antibiotic and dead spirochete residue that had been making me feel so tired and had been clogging my system.
Four years later, I am well most of the time. I do boot camp or dance at least four days a week and I don’t take any supplements or medications. Because I eat well, exercise regularly, get enough sleep, avoid alcohol, smoke, mold and major systemic toxins, I feel fine. I am active in the Lyme research community and work, along with my Lyme literate physician husband, with patients who suffer from tick-borne diseases to help them recover their health. I am uplifted to see the recent interest in Lyme disease and co-infections, both in the media and the community. This past year, significant progress has been made towards better awareness, diagnosis, testing, and treatment of tick-borne infections. I am one hopeful tough mudder.