“You can do this. You wanted to come to this party. Just smile and nod,” Paula Jackson Jones thought as she tried to focus on the story her friend was telling. But she felt so overwhelmed with fatigue and brain fog that she couldn’t concentrate.
“Even going and sitting and being around people, not even exerting myself, was exhausting,” recalls Paula. “The noises were overstimulating, and when I responded, my speech came out slurred and jumbled. And later that night when I tried to recount the incident to my husband, I couldn’t even remember my lifelong friend’s name. It was so scary!
The Downward Spiral
“Just a year earlier, in the fall of 2009, everything was sunny: I was healthy, newly remarried to my high school sweetheart, and we’d bought a house in the town where we grew up. Life couldn’t have been better!
“But everything changed when I started feeling anxious and strange, like there were electrical currents running through my body. So I went to my primary care doctor, who chalked it up to holiday stress, put me on medications for depression and anxiety and sent me home. But every couple of weeks a new symptom would start: night sweats, chest pain, trouble breathing, muscle weakness, slurring my words. I had pain that moved from my shoulder to my knee and then to my back, where it felt like an ice pick stabbing my spine.
“Brain fog and fatigue started to disrupt my daily life. I did billing and insurance claims in a dental office, and I started making mistakes, so I cut back on my hours. I tired so quickly my husband had to take over the housework, laundry, shopping and cooking. And when I saw people I’d known my entire life, I would smile, but I couldn’t tell you their names. It made me depressed, frustrated and terrified.
“Doctor after doctor ran inconclusive tests, dismissing my symptoms. I felt ignored, like they were trying to convince me of what they thought I had. When I told people what I was going through they would joke, ‘Yeah, I’m getting older too.’ But I knew it wasn’t the same thing.
“After a year of frustration and getting sicker, I was racking my brain for a clue to my symptoms and recalled a tick bite I’d gotten doing yard work before this all started. My husband had removed it after only a few hours, so we never gave it a second thought. Plus, I had no clue a person could get as sick as I was from one tick bite. Even so, I mentioned it to my doctor, and he agreed to run a Lyme test. It came back negative, but the possibility that I had Lyme stuck in my mind.
“At this point, my doctor did some brain scans. And when one showed lesions, I was diagnosed with multiple sclerosis. I was so relieved to finally have a diagnosis that made sense that the devastation of it didn’t register. But the treatments didn’t work, so they said I had Parkinson’s. When my symptoms continued to worsen, they suggested I had ALS (amyotrophic lateral sclerosis).
I broke down sobbing-it felt like a death sentence, and perhaps worse, it still didn’t feel right. Despite six Lyme tests coming back negative over 18 months, I felt sure that my symptoms pointed to Lyme disease, and I begged my doctor’s intern to help me find a Lyme specialist. He wrote a name and a phone number on a scrap of paper and slipped it to me on my way out.
Healing at Last
“That name was Sarah Ackerly, a naturopathic doctor, and she was the 24th and last doctor I saw. She sent my blood work to IGeneX, a company that specializes in testing for tick-borne diseases, and diagnosed me with latestage neurological Lyme disease, plus four other tick-borne illnesses. It was such a relief to finally be heard and know what was wrong with me.
“Dr. Ackerly took me off the medicines I’d been given for depression, anxiety, panic attacks, and pain so she could assess my health baseline. We started with a natural protocol including supplementing with curcumin and the liver-supporting amino acid NAC to dissolve the protective biofilm that the Lyme bacteria had likely built around itself, and then we attacked the infection with antibiotics. We used Chinese herbs like artemisiae, coptis and cordyceps to strengthen my immune system, fight my fatigue and suppress inflammation. And we used slippery elm to heal my gut.
“At first I felt worse, as the bacteria and toxins that had been hiding in the biofilm were released into my system. But I knew it meant the treatment was working, so I remained hopeful. My recovery was like a roller coaster, but I got better. The brain fog lifted, the pain subsided and the strength returned to my arms and legs. I got healthy in the spring of 2014, and I have been ever since!
“Today, I feel like a 2.0 version of myself. I co-founded Midcoast Lyme Disease Support and Education to help educate sufferers and advocate for change in the way individuals, medical providers and community leaders view tick-borne illnesses. I also protect myself against future tick encounters by wearing natural repellent and treating my clothes with Sawyer Permethrin Insect Repellent. I want to reach others who are looking for help and tell them that even if it seems hopeless, recovery is possible!”
This story originally appeared in our print magazine.