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  • Suzanne Casamento

My Chronic Lyme Disease Healing Journey

Updated: Apr 8

In 2012, I moved into a little beach shack right across the street from the ocean. It was kind of junky, but I didn't care. Walks on the beach and the view were worth it.


As always with hindsight, I didn't realize that a series of infections coincided with the move. Urinary tract infections, kidney infections, horrid yeast, insatiable thirst, and constant fatigue. After I moved in, I was constantly sick, but I didn't let that stop me from my normal life. So, what if it took me five days to recover from a night out with friends? The party was worth it.


My coping strategy was to ignore the problem, but the constant infections started to impact my relationship. After all, you can't have sex when the lower regions are constantly infected. I saw a GP, a gynecologist, and a kidney specialist. No one had answers. I started a never-ending loop of antibiotics and antifungals.


Then I got dumped. I was blindsided. I thought we would be together forever. Turns out, he didn't agree. As I was about to meet him for the last time, my back went into spasms. I'd never felt pain like that before. I couldn't move. I ended up in the hospital.


Later, I realized my body had refused to let me suffer through one last meeting. Shortly after my back spasms, I lay on my couch in the beach shack, high on painkillers, staring at the ceiling, crying and thought, "Maybe I should get some help."


I started seeing a somatic therapist. Together, we started excavating past trauma. I slowly started walking again. I found a Chinese herbalist who helped dull the infections. One day, while she did muscle testing, she said, "You've been exposed to high levels of mold. You need to move immediately." I laughed. I was broke and my best friend was dying of cancer. Three other friends of mine were doing our best to care for her children and keep her alive. The stress was suffocating. I couldn't do anything until she died. Plus, I wasn't sure I believed the Chinese herbalist. I didn't see any mold in the beach shack. But then a week or so later, I pulled a shirt out of my dresser and saw a powdery film on it. I took it outside and lay it in the sun. It disappeared. Mold.


I trudged on, caring for my friend and her kids, seeing my therapist, and researching mold. Turns out, you have to move when it comes to mold. After my friend died in January 2016, I asked my father for money to help me move. I was 44 years old. It felt like failure, but I didn’t have a choice.


Thankfully, he said "yes." So, I got rid of everything. All my furniture, all my clothes. Everything. It wasn’t the first time. In 2008, I lost my job and ultimately, my house and just about everything in it. Getting rid of everything wasn’t as painful the second time. The first time, getting rid of everything felt like losing myself. The second time, things just felt like things.


I moved into a tiny studio apartment. Through my research, I learned that mold can trigger and reactivate Lyme disease.


Everything clicked.


In 2003, I’d been bitten by a tick. Back then, I took the antibiotics and took a Lyme titer a few months later. The doctor said it was negative and to forget about it. So, I did.


In 2016, as I settled into my tiny studio, I was so sick that most days I couldn’t think well enough to work. My head felt like a bowling ball. I had daily fevers, horrible cramping and vomiting spells, and brainfog so bad, some days I couldn’t talk. But I finally had an answer: Chronic Lyme disease.


So, I started researching Chronic Lyme and discovered it comes with lots of coinfections. It attacks your weakest parts. For me, that meant urinary, vaginal, and kidney infections. It also comes with Epstein Barr Virus which explained the daily fevers and the brainfog and fatigue.


By 2016, my whole life had changed. There was no more partying with friends. No boyfriend. I ate a super clean diet. I was sickly skinny and slightly green. I’d lost about half of my hair and what was left was almost all gray.


I kept seeing my somatic therapist. I saw a western Lyme expert who got the fevers under control enough so that I could work. I saw a homeopath, a natural path, an osteopath, an acupuncturist, the Chinese herbalist, and so many more doctors. Each one helped a little bit, but I was still sick.


By 2018, I was drowning in medical debt. The year before, I’d made $31,000 and I’d spent $20,000 in out of pocket medical costs. My cabinets looked like a pharmacy. That January, I knew I had to do something different. So, I googled “best energy healer in LA” and made an appointment. Then, I borrowed money from a dear friend (which I’m still paying back) to buy an ampcoil, a frequency healing device that uses PEMF to balance the bioterrain of the body to its natural healthy state. That year, I continued therapy, saw the energy healer on a regular basis, used the ampcoil, and explored other healing methods like breathwork meditation and EFT Tapping. I also wrote a new novel, which might have been the most powerful part of the healing journey. By June 2019, I was healthy and I’m still physically healthy today. I’ve learned to listen to my body, set boundaries, care for myself, and cope with trauma in healthy ways. But a true healing journey never ends.


Last summer I got rid of all my things one more time. I stored a few boxes, mostly of my grandmother’s belongings, in a friend’s attic. Other than that, everything I own fits in a suitcase.


I launched my digital nomad journey in beautiful Bonaire. Since then, I've spent time enjoying snowy mountains of Vermont, the friendliest pubs in Ireland, and the most beautiful scenery in Sonoma County, California.


This summer I’m heading to Greece for a writing retreat. From there, I'll visit friends and explore different parts of Europe. Like my healing journey, I'm letting the trip evolve as I go, simply taking my ampcoil and my woo woo modalities with me, open to whatever comes my way.


PHOTOS: 1. The beach across the street from the Beach Shack

2. Me in beautiful Bonaire

3. A crazy night in Ireland

4. Me on a Sonoma County beach

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