By Milena Pastore

To say there is bad karma surrounding Lyme disease is quite an understatement. Controversy has plagued the illness ever since its discovery over 40 years ago, and patients have borne the brunt of it.

Unbeknownst to me, my Lyme journey began in the 80s. As a child, I experienced my only known tick bite while playing in my grandmother’s yard.

One day, while climbing a tree, I discovered a bug near my armpit that I couldn’t wipe off. Afterwards, I started experiencing periodic migraines. They would leave me in bed for days, with my head in a painful, vise grip, vomiting and unable to see.

Yet, when I wasn’t engulfed by migraines, I was considered to be a reasonably healthy kid and participated in sports and school activities.

Mysterious symptoms

Like many people with undiagnosed Lyme disease, over the years I experienced mysterious chronic and recurring symptoms interspersed with periods of relative wellness.

Fast forward to 2016. I had just turned 33 and had been living and working in New York City for 10 years. I couldn’t fully articulate what was going on with me, but clearly something was not right.

Routine blood work showed nothing abnormal. Yet, I could no longer attend social functions and it was getting harder to make it into work. I would call out sick several days each month, unable to get out of bed. I was in pain, fatigued, anxious and depressed.

My mental health struggles led me to meet with psychiatrists and therapists, after which I was convinced that I had a chemical imbalance. Never once did I, nor any of my providers, consider that the underlying cause of my symptoms could be a bacterial infection.

I stopped working and moved back to my home state of Colorado. I figured that I just needed to take some time off and make a few lifestyle changes. After all, burnout from fast-paced and demanding New York City life was not unusual.

Learning about root causes

I was also keen to pursue my growing interest in different wellness and healing modalities such as yoga, herbalism, and reiki. My inner healer was starting to awaken. This would play a vital role in helping me to navigate the journey ahead. I began to educate myself on different root causes of poor health, including the developing research in the areas of mental health.

Despite my worsening health, I enrolled in a 28-day intensive yoga teacher-training course. To this day, I have no idea how I completed it. At the end, I was exhausted and in a lot of pain. I had planned to start my own yoga business, but at that point, I couldn’t even get out of bed. I struggled with basic tasks such as bathing or emptying the dish washer and had to hire someone to help me care for my dogs. My parents covered my living expenses.

My chiropractor casually mentioned that I reminded him of his patients who had Lyme disease. Motivated to explore this possibility, I found a doctor to order western blot testing for me. Though I was not CDC positive, the doctor said my specific bands on the western blot test showed I did have Lyme. I began treatment.

The following years would prove to be the most agonizing, dark, and isolating chapter of my life. Decades of underlying infection had wreaked havoc on my body and its different systems. My adrenals were shot. Autoimmune issues, environmental sensitivities, as well as other opportunistic infections were uncovered.

What little energy I had was spent at medical clinics, pursuing treatments, practicing essential self-care, and educating myself on the complexities of Lyme disease recovery.

Even though I struggled cognitively, I did my best to continue learning healing concepts and skills. Over time, and through many ups and downs,  I persistently worked to treat, detox, and heal. Eventually, my symptoms lessened and ultimately, so did my mental/emotional struggles.

Gentle healing yoga

In the spring of 2021, I began offering virtual yoga and stress relief sessions to others, as a way for us to cope with anxiety and isolation brought on by the pandemic. After connecting with more of my fellow Lyme disease patients, I developed a specialized program with the gentlest elements from yoga traditions that are centered upon healing.

I carefully selected or designed modified asana (postures), gentle breath work, meditation, visualization, and mantras (affirmations) exclusively for those who are living with the many physical, emotional, and cognitive challenges caused by chronic illness.

And while my recovery continues, I have reached a point where I can expand and provide my unique offering to a wider audience. Early this year, I formally launched Soul Tribe Yoga Collective, a virtual yoga community.

Soul Tribe Yoga Collective is a safe and supportive space built on pillars of authenticity, inclusivity, compassion, and non-judgment, where students can be genuinely seen and heard. I strive to bring healing to body, mind, and spirit without causing exhaustion, flareups, or setbacks. I offer modifications to meet all students regardless of where they are in their healing journeys. Many of my students join from bed or the couch. Some do not own a mat, and that is not a problem. All are welcome.

In February, I was invited by the Colorado Tick-Borne Disease Support Group and the Colorado Tick-Borne Disease Awareness Association, two organizations that are very near and dear to my heart, to guide their monthly support group through this specialized yoga.

Monica White, left, of the Colorado Tick-Borne Disease Awareness Association. Milena Pastore is on the right.

I offered two classes, one for those who are mobility impaired and struggle with intense pain, fatigue, and weakness, and a second for those who were able to try a more advanced yet very gentle class. It felt wonderful to give back to these organizations, as well as to the beautiful and resilient patients who attended each class.

The universe works in mysterious ways, and I recognize that, for me, Lyme has turned out to be a blessing in disguise. This bleak, isolating and often gut-wrenching experience has taught me what is truly important in life and led me to understand exactly what I need, desire, and deserve. And although the road to recovery has been difficult and seemingly unrelenting, it helped me to define my purpose. It also inspired me to create my own unique way of giving back.

No two Lyme disease patients are the same. And although we  may come from different bodies, backgrounds, beliefs, and circumstances, navigating this challenging journey is what unites us. By practicing karuna (compassion), one of the yogic key approaches to life, I am able to recognize the pain and suffering of my students, as well as hold space for them in their time of grief and struggle. And although our time together each week may be brief, I know that the healing work we do goes a long way in supporting them on their journeys.

You can learn more about Milena Pastore’s work via the Soul Tribe Yoga Collective website.