Aubrey's Story of Healing Lyme Disease

My Lyme story began almost 2 decades ago when I woke up one morning with a swollen right knee that was painful to put weight on. It took several weeks back then for doctors to figure out what was wrong; after referrals to orthopedics, an MRI of my knee, and bloodwork, the final diagnosis was Lyme disease. I was given 3 weeks of Doxycycline and I was informed that this would cure my Lyme.

At the time, I lived in eastern CT which is ground zero for Lyme disease. Although this disease was initially discovered in the early 1980’s, twenty years later when I had my first run-in with it, doctors still did not really know much about it and incorrectly believed it could be cured with a simple, short dose of Doxycycline or Amoxicillin. I also was not tested for any tick-borne co-infections. There was never any mention of these made.

I seemed to recover well after the three weeks of antibiotics ended; at least my knee had returned to normal and I wasn’t getting frequent headaches. However, over the next several years, I often suffered from fatigue, headaches, random joint pain, poor memory and concentration, depression, and anxiety. I was also sick a lot and my immune system sure wasn’t in a good place. Perhaps all of these maladies were unrelated to Lyme and co-infections, but I do wonder if that could have been the underlying cause since my lab work was always within normal limits.

Then, in the early autumn of 2011 when I was hiking a lot with my dogs, I became seriously ill for over a week with flu-like symptoms. My normal physician was out of the country at the time so I had to go to an urgent care facility. I was tested for strep and influenza strains but these all came back negative. The doctors then thought that maybe I had an antibiotic-resistant sinus infection. They had to prescribe me stronger antibiotics and I slowly recovered.

Over the years that followed, my health slowly began to decline. I returned to school to get an associates degree in a healthcare field, I worked 2 jobs and completed a semester of full-time fieldwork. I landed a full-time job about 5 months after graduating and passing my boards. It was then that I began to notice that I had frequent headaches and migrating joint pains. I also had a hard time focusing and would often forget what I had just read about. I began to experience difficulty with word retrieval when I was speaking. I napped often because I was always tired, no matter how much sleep I got. I had minimal energy. I knew in the back of my head that something was wrong, but I chose not to listen to that voice. I figured I was just out of shape or not eating healthy enough or maybe just pulled muscles more often than other people or had stress headaches. I made up so many excuses as to why I did not need to see a doctor.

In the spring of 2016, we sold our house quicker than we were expecting and had to stay with my parents for several weeks while we anxiously waited to close on our new home. It was stressful; 4 humans, 2 cats, and 6 dogs in a small house was not the best scenario. I was also taking on my first fieldwork student at work and it was not an easy experience. I think the combined stress set off a ticking bomb in my body; within weeks I had debilitating headaches, frequent joint pain, often got short of breath, was having issues with my memory and constant fatigue. Despite all of this, I waited until October of that year to call my doctor. They immediately set up an appointment when I said I suspected I had Lyme disease and so began my second journey down the road of dealing with this disease. 

My blood work for various autoimmune issues came back fine but my ELISA test, and consequently Western blot test, were both strongly positive for Lyme. In fact, I had 8/10 bands turn up positive on the Western blot test. I was prescribed Doxycycline twice a day for 3 weeks. I was not warned that I may feel worse once starting the medication (called Herxing). They scheduled a follow-up visit and I was sent home. Within a few days of starting the Doxy, my headaches became unbearable. I called the doctor’s office several times asking if this was normal, to which the nurse replied that yes, this can sometimes happen and that I just had to work through it but also was told to call back if it got worse. I spent many nights soaking in Epsom salt baths to try to help my body detox from all the bacteria that were being killed by the Doxy. I had to find this information myself; my doctor’s office never told me any of this information. My 3 weeks of Doxy was extended to 30 days because I experienced such a significant herx. When I went back for my follow up, I told my doctor that I felt about 70% better but still had some lingering symptoms. She assured me that I may have “Post Treatment Lyme Disease” but that all symptoms should clear up within 6 months. How I only wish that had been correct.

2 months after taking the last dose of Doxycycline, I woke up one morning with terrible shooting, burning pains down both legs and Charlie horse type of cramps in my calves. Something was definitely wrong. I quickly declined; my legs began to feel cold at times, my anxiety got really, really bad, and I had chest pains and insomnia. I remember driving to meet Jay somewhere one day and thinking, I’m going to die if I don’t do something about this. I was terrified.

Thankfully, my cousin recommended a Lyme Literate Medical Doctor (LLMD) to me who her own family had been seeing. She urged me to go and although he didn’t take insurance (because the CDC/IDSA/insurance companies deny that chronic Lyme exists) I called and made an appointment for the following week. I almost cried when his receptionist told me that yes, this sounded like a bad case of Lyme, and yes, they would be able to help me.

At my first appointment, Dr. ZS sat with me for almost 90 minutes. He performed all kinds of tests; balance tests, reflex tests, memory tests, and looked over my bloodwork from my PCP’s office that previous October. He also asked me a lot of questions about my symptoms and then drew more blood because he explained that he thought I may have tick borne co-infections as well. I left his office feeling hopeful that it would be a fairly quick recovery since I didn’t seem to have too many neurological impairments caused by Lyme and co-infections. Again, I wish that had been the case.

As it turns out, I also tested positive for Babesios and while I never had a positive test for Bartonella, I was clinically diagnosed with it based on my symptoms. I spent the next 18 months taking multiple antibiotics at once (and later on, pulsing them - where I’d not take them for a week and then take them for 2 weeks - this is a method to try to hit the bacteria at different cycles and also to reduce likelihood of antibiotic resistance). I was usually taking 3 antibiotics at one time. I was also swallowing dozens of pills a day because I required supplements to boost my immune system and address vitamin/mineral deficiencies. I herxed terribly at first which ended up with me in the ER because I thought I was having a heart attack. In reality, my body could not keep up with all of the die off of the bacteria from the strong antibiotics. I had to learn all about detoxing, eating clean, and doing whatever else I could to help my body detox effectively (thanks to also having been blessed with the MTHFR gene mutation which affects the body’s ability to detox through the liver). 

I had to go on intermittent FMLA at work because I was calling out so often in that first year. My symptoms initially ramped up thanks to herxing and then would almost cyclically flare up. I’d feel fine for a few days or a week, then suddenly I would get dizzy spells, chest pains, anxiety, tingling sensations in my hands and head, my ears would ring intermittently, I would experience air hunger (to me it felt like my ribs were being squeezed and I couldn’t breathe). I had the muscle pains and burning sensations in my legs still, as well as the cramping, but it did diminish slowly. I also had severe pain in the joints of my hand/wrist and would experience random migrating, intense pain all over that felt like an ice pick being drilled into my skin. I had muscle twitches constantly all over, I had insomnia many nights a week, I was exhausted, I was depressed. I was an avid reader but suddenly could only read a paragraph at a time because my concentration and memory were horrible. My balance was horrendous and I had constant floaters in my eyes. My lymph nodes were swollen and painful and I started to lose a lot of hair daily. I also developed Raynaud’s syndrome (when your extremities can’t tolerate temperatures below 45-50 and go numb/painful/turn purple) and was always either freezing cold or sweating. I had night sweats from the Babesiosis, too. I was a mess; I was depressed and afraid to leave my house because of my anxiety and dizzy spells. I cried (like, broke down sobbing) alone in my bathroom or at work or in my car a lot. I became a shell of the person I used to be and finally started seeing a therapist to help me work through the terrible panic attacks, anxiety, and depression I was experiencing. It was the lowest point I’ve ever experienced and I wanted to give up just to stop the pain and fear. It was a scary, terrible time.

However, as this journey has taught me, I’m an effing fighter. I’m way stronger than I had ever realized. 18 months into treating with Dr. ZS, my body began to reject the antibiotics; they became too toxic for my body to handle so he pulled me off all of them and I stopped seeing him. Within 2 weeks, my symptoms quickly began to come back and it was terrifying. I had gained so much progress over the last 18 months and I began growing depressed thinking that I would never truly get better. Thank goodness for online Lyme support groups via Facebook because I met a lot of wonderful people - one of whom recommended an herbalist, E, in VT to me. I began taking some herbs on my own while I waited to get an appointment with her since she had a waiting list at the time for new patients. When we finally had our hour-long phone consultation, I immediately got the sense that she would be able to help me heal. Finally, my intuition was right about something! E has now been treating me since November 2018 and she’s been a Godsend. She and I met monthly to go over progress and symptoms and she’d send me core support tinctures and antimicrobial tinctures of herbal blends specifically targeted to my symptoms and diagnoses. 

I was doing really, really, well, but as the saying goes, healing is not linear. I experienced a few hiccups along the way; I totaled my car, experienced kidney stones and a double kidney infection, and I decided to leave my job and change my career path; I returned to school to pursue a graduate degree in the fall of 2018. However, I did make steady progress overall and by the Spring of 2019 I was finally doing really well. I decided to take on a second part-time job while also taking 2 intense summer courses and still working at my regular job. This actually sent my progress backwards; I took on too much too soon and some old symptoms began creeping back in. Despite this being painful and upsetting at the time, I can look back on it now as teaching me a lesson: I learned how much was too much for my body and I learned how important it was to set boundaries for myself and listen to my body. This also lead me to my new LLMD, Dr. JS. He was recommended to me by the same friend who recommended E and once again, I am forever grateful to her for her support and guidance. 

Dr. JS happened to work with E so it was a perfect fit since I was really hesitant to go back on antibiotics (who can blame me after I experienced anxiety so bad I felt like I was crawling out of my skin and having panic attacks multiple days in one week?). We’ve gone really slow since my body is now so sensitive to everything, even herbs. I literally had to begin on micro-doses of herbs - like 3 tiny drops a day! He had me do more bloodwork and also had us test our house for mold because mold toxicity can complicate healing from Lyme as well. When my labs came back, I heard the best news I’d ever wanted - I was in remission from Lyme! But I was still dealing with Babesiosis, Bartonella, our house was riddled with mold (and it was detected in my urine), and I also had significant Candida overgrowth probably from years of antibiotics. He immediately treated me for the mold and in turn, we treated our house to eliminate environmental mold. I also kept taking, and slowly increasing, my herb doses. We then tried Rifampin for Bartonella but I herxed so bad after a few days that Dr. JS had me stop taking it. We also had to address my anxiety and the fact that my autonomic nervous system (ANS) was completely fried; I was experiencing heart palpitations, temperature fluctuations, some fatigue, panic attacks, hair loss, etc. E also suspects that my adrenals were shot and that my thyroid was super sluggish. I had to go on an rx medication for my anxiety because I almost could not function. We took a step back from treating the tick-borne diseases and focused on healing my ANS through a variety of herbs, an rx med, and lifestyle changes. Our plan going forward is to wait until I stop herxing from increasing my herbs, then I’ll begin taking antibiotics to treat the Bartonella and Babesiosis.

My story is not yet finished, but I’ve come a really long way. I’m incredibly proud of and grateful for my body and how strong it is. I’m almost finished with grad school and have maintained a 4.0 GPA all throughout while working at a job I love 25-29 hours a week. I now experience almost no symptoms consistently and only herx slightly when I increase my herbs (I’m now on 40 drops/day of my Babesia/Bart antimicrobials and 30 drops/day of my Lyme/immune ones). I am not constantly plagued by anxiety and have not had a panic attack in months. My liver is finally detoxing efficiently. I’ve even begun a Couch to 5k program with a friend (we’re about to finish week 6 this week); I had never been a runner even before I got really sick, and last week I ran 2 miles straight without stopping. My goal is to be able to run a 5k, and then start training for a 10k. I also do yoga. I have so much energy every day and am almost always in a good mood that my husband has told me numerous times I’m like a new person. I’ve become a lot more positive and focused, and I’m vibrant and full of life again (and truthfully, probably for the first time since I was a child). This journey has taught me how to have perseverance and strength. It has taught me to hold onto hope, even when everything got really dark. It has showed me how important it is to take care of my body/practice self-care and to set limits for myself. It has taught me how to advocate for myself and to seek answers elsewhere when I don’t get them from health professionals. I have learned that I’m incredibly strong and can handle pain well, and I have learned how to turn this experience into a resource for other people.

I hope my story can inspire others who are struggling to keep going. It WILL get better, you WILL heal. It takes time, sometimes years, and a lot of hard work and mental fortitude, but it is possible. I am a great example of this; I was a pessimist for so long, yet I still achieved healing and today I am in a better mental and physical place than I ever have been. Always, always advocate for yourself. Listen to your body if it’s trying to tell you something is off. And most importantly, don’t give up; if I can make it through this, anyone can. Stay strong, Lyme Warriors!