April 27, 2016

I Survived Lyme Disease. This is My Story.

update Lym disease shot

I’m a native New Yorker, though I write this from a small historic home in Boulder, Colorado while staring at a photo taken during a recent trip with close friends to celebrate my 40th birthday.

At first glance, one could think this photo represents a snapshot of a life like many others on Instagram and Facebook—a happy, fit, and carefree woman frolicking in a bikini on the beach. In that moment, I was all of those things, but the truth is, it took all the personal strength I could muster, and a vetted team of doctors, health-care practitioners, friends and family to get me there.

Five years ago, I could barely get out of bed to go to work, let alone get on a plane to celebrate a birthday in my bikini on the beach.

I’d lived in New York City most of my life, and had the life many young women dream of. I enjoyed the arts, piano and dance, fashion, fun and all things international, with a circle of friends that could give the support of a small village. A tad Type A, I was always a go-go-go, achievement girl most of my adolescence into adulthood. The funny thing was, I always felt something was missing, that there was something bigger and better on the horizon.

During my mid-20s, I experience bouts of fatigue, finding it more difficult to recover my energy after a night out with friends, a dance class, or a normal day of work. I wasn’t exactly leading the healthiest lifestyle then, but I was young, and doing it all seemed easier for others. I was desperately trying to keep up.

My symptoms slowly increased and by the time I was 35 I was consciously trying to slow down and take care of my body. I started questioning my happiness in New York and wondered why things always felt so arduous and challenging. A simple Sunday brunch felt overwhelming. I was exhausted.

Around this time I experienced my first wave of panic one day when I was at work.

It was as if the floor had come out from underneath me. I shot up with a straight spine and looked around to make sure we weren’t having some sort of earthquake. I gripped my desk, half laughing, half terrified, shaking it off. A few days later, on my way to meet a friend for a glass of wine on a beautiful spring day, that wave of panic hit me again. I could barely walk or see straight. The sidewalk felt like it would break apart and swallow me whole. The vertigo was so intense that I gripped the lamppost on the side of the street. Once I’d made it to the bar, I downed what seemed like an entire bottle of wine.

This experience happened many times in the upcoming months, once so badly as I walked through Central Park South that I still can’t walk along that block without feeling as if something will tank. My head became foggy. I started breaking out in rashes and having strange sensations in my arms and legs. Clumps of my hair would come out in my hands in the shower. I would sob, seeing hair that had been thick and shiny just days before, becoming thin, brittle and dry. I was paralyzed by fear and unable to form words. I would have to leave my dance class, normally a sanctuary for me, because it felt like the walls were closing in, my head crushed by pain.

I wondered if I was going mad. But this decline felt dissociative of my body’s usual norm. I knew this was something else. Something foreign.

I started a long series of doctor visits. Each visit began with hope and certainty that this particular expert would find something, and then end in dismay and disappointment. “Perhaps you could use anti-depressants,” one doctor would say, and then ask, “What is happening in your personal life?” “Maybe you’re working too hard,” another would say. “Just rest.” Then another, “Maybe you need a psychiatrist.”

Out of exhaustion, and with reluctance, I agreed to see the head of neuropsychiatry at Columbia Hospital, referred by a friend who’d said, “If this were one of my family members, I would send that person to this doctor. You’re going to be okay.” I remember thinking, “But I am not unstable. I am not. Am I?’

Seeing the neuropsychiatrist was the first turning point in my journey. I know medications help millions of people. I know they save lives and give people the balance they need. But after a small dose of anti-depressants from the neuropsych made me a million times worse, I felt validated that this was an underlying physical problem. This wasn’t depression or an emotional imbalance.

I was lucky to be diagnosed with Lyme disease six months after my symptoms began.

So many people go years without a diagnosis, and the longer you go undiagnosed, the harder it is to treat. Inna Topiler, C.N.S,  a nutritionist I started working with before my diagnosis, recommended Mary Powderly, MD,  a New Jersey-based gynecologist (of all things). Powderly worked integratively and wanted to test everything from A to Z. She tilted her head after our two-hour consultation and asked, “Have you ever been tested for Lyme disease?” Here I was, a New Yorker who grew up some in the city and some in Long Island. Huh. Lots of weekends in the Hamptons. Hmm. No real hiking, maybe just biking or lying on a beach. Never saw a tick bite. Ever. I definitely did not think this was Lyme disease, but what did I know?

My Lyme tests came back with a few markers. This means that Lyme was in my blood but we were not sure if it was active or not. Sometimes people only have one or two markers. I had about eight. The only way to know for sure if I had Lyme or not was to see a Lyme Literate Medical Doctor (LLMD) and to take a test with a lab called IGeneX in Palo Alto, California. After doing my research on LLMDs and not finding one geographically close, I decided not to see one. I then researched The Morrison Center in New York City that works with integrative and functional medicine and decided to work with them. Once the test confirmed I was positive for Lyme and a co-infection of Bartonella, I was thrilled that we had something to treat! Quickly! Right??

Many people still don’t know about Lyme disease even though it is the fastest growing vector borne infectious disease in the United States, according to the CDC. The numbers are astounding, with 300,000 people infected per year, and these are only the people that are diagnosed.

Lyme disease is caused by the bacterium Borrelia burgdorferi and transmitted to humans through the bite of an infected tick. The tick bite spreads its lovely bits throughout your body and can lay dormant or undetected for years. Fifty percent of people bit by a tick do not detect it, or the resulting bulls-eye rash. Bartonella, along with other co-infections, are the bodyguards and big-brother bugs of Lyme, and even harder to treat. And as I waded through the muck of what would seem to be an endless sea of shot-in-the-dark treatments, I learned that Bartonella gives wild neurological symptoms that can imitate borderline mental illness—the symptoms that brought me to the neuropsychiatrist—and Lyme on its own can impact the whole body’s immune system. The two together can give a nice all-around train-wreck of symptoms.

I later came to learn that Lyme disease can affect your hormones, and basically strip down and alter all of your bodily functions and ecosystems. From your epithelial cells and oxygen levels to liver detoxification and cognitive impairment. My eyes constantly had a gray veil over them. A woman once described it best that it felt like she was constantly driving through torrential downpour without any windshield wipers. And we haven’t even touched on joint pain. Pain, I could handle. Neurological issues, not so much.

The one thing I did almost everyday after my diagnosis was research treatments and success stories on Lyme.

I couldn’t find more than one or two success stories. Did no one really ever recover? Or by the time they were better, they had no need to tell us about it? All I saw were websites upon websites with commentary from hundreds of people trying protocol after protocol, still sick after many years of treatment, swimming in a sea of helplessness. Barely any treatment of Lyme is acknowledged or covered by health insurance companies, and why is this? To give people “hope” there is a movie called “Under Our Skin” that is great if you want to know what Lyme disease does but also makes you want to walk in front of a bus.

I have to poignantly mention that there isn’t a silver-bullet protocol for treating Lyme disease. There are first-line-of-defense protocols, such as antibiotics, that most doctors start with. If I were to begin my healing process again, I would not have gone that route. I went through the trial and error of many different kinds of treatments, layer by layer. Most treatments had me sicker than the disease itself had in the first place. Which is technically “good” as the body goes through what is called a Herxheimer reaction. On top of that, most of the doctors and practitioners hadn’t worked with someone so sensitive to everything. I would take full doses of medications or herbal treatments that most people could handle, but it would have my body railing for weeks till we titrated things down to small fractions of a dose to make progress without making my body give out even more. After about a year of antibiotic therapy and not a whole lot of progress, and one antibiotic that practically killed me, that was that. No more antibiotics. Great. Now what?

I started feeling like I was going to lose.

There was one nurse, I’ll never forget her—she was amazing. Her name was Denise. She gave the patients all our intravenous therapies with such grace, humor and humility. I would crawl in after work, exasperated for having to perform all day and keep on a “happy mask” to cover my exhaustion and pain. I didn’t have the luxury of not working and, really, it was the one thing that got me out of bed. But when I would come into the treatment center, I would put on my earphones and close my eyes in the cushioned lounge chair. This was almost heaven. Even though she was sticking a needle into my arm multiple times, veins starting to roll, I relished the thought of someone taking care of me and not having to think. I didn’t want to hear everyone talking about treatments, illness and the years of ongoing anguish. I separated myself. I didn’t want to identify with the disease. That was just me. But Denise would say quietly to me,

“You’re going to get better. Don’t think about it constantly. Keep going to work, and keep fighting. Keep up with the interests you had before as best you can. Don’t give up.”

I became immersed into my treatment. The doctors at The Morrison Center were wonderful, but I felt at times I was going around in circles. This is typical of Lyme treatments in general. I stuck with the intravenous therapies there, but on my own, I went back to the basics; clean food, rest, breathing. More digging. I became a vegetarian, and cut out gluten, dairy, sugar and anything processed. I mean, I had always been on the healthy side, but gone were the days of a dirty martini after work, replaced instead with going home to juice, eat a kale salad, give myself needles of glutathione, take a salt bath, rest, then wake up the next morning to go to work and somehow get through it again.

I started practicing hot yoga and noticed I felt almost myself again for a few hours after class. A friend of mine introduced me to 5-Rythyms down in the village, a movement meditation practice that made me feel like a techno kid back in the 90s while getting a good sweat in. Hmm, sweating. I starting realizing detoxification and movement made me feel better.

It was around this time that I found a woman named Perry Fields that calls herself The Tick Slayer!  Yep. You heard me correctly. Finding her was a big step in my path to recovery. Perry’s recovery from Lyme was one of the two success stories I had found along the way. I dove into her book, researched the hell out of the information in it, and gave her protocol a shot. First stop, Houston to get cavitation surgery, where they scrape your jaw for any undetected Lyme infection. Nuts. But, lots of research backs up infections starting in the mouth. I had all mercury taken out, all root canals taken out using a “natural” form of anesthesiology. It was drastic, but I didn’t care. People thought I was insane. But after that surgery I felt my eyes could see clearer, and my head was just a smidge less foggy.

Perry was onto something. I stuck with her. Back at my apartment, it looked like a science project had turned circus-rogue in my 450-square-foot studio packed with all my contraptions, supplements, and trampoline. The dance with these critters was kill, detox, kill, detox.  The treatments I felt the most comfortable with were based on alternative healing and maybe…weird. I loved coffee enemas. Yep, coffee up the butt. My partner at the time brought home the enema kit and organic coffee, boiled the pot, and then I made him try it first. (After cooling, of course) Ha! That was love right there. Coffee enemas stimulate your glutathione levels,  the mother-load antioxidant that your liver produces. I started to notice, dare I say, that I was slowly getting a bit better. Then worse. Then better. That happened a hundred times, till eventually I realized I was a shred better overall than I had been six months before.

Here are the top actions that, in retrospect, were the most significant in my recovery.

Each feels like it should be given the number one spot. The biggest goal overall was to build up immunity and reduce inflammation. Here’s what helped me.

1. Working with a clinical nutritionist or a naturopathic doctor to balance my hormones by using the highest quality supplements. This is especially important for women, but also important for everyone, and includes balancing the adrenals, thyroid, and neurotransmitters.

2. Cleaning up my diet. I switched to clean eating, no sugar, gluten or processed food.

3. Reducing overall stress with body and energy work. (Maybe this should be number one!) Massage, acupuncture, biofeedback, Reiki.

4.  Taking high doses of vitamin C intravenously (10 grams or higher) followed by a bag of glutathione. Do this once a week if you can.

5. Rotating certain herbs into my diet to bust the cycle of Lyme and co-infections. There are too many to list, I used just about everything. But I really liked and eventually stuck with Beyond Balance herbal supplements and rotated a variety from that company. They’re for sensitive patients like me. I combined this with Argentyn 23, a high- grade suspension hydrosol silver (not the same as colloidal silver!).

6. Investing in an Infrared Sauna. It is so worth it. Infrared literally gives you a fever to the core of your body and kills infection. Be sure to hydrate.

7. Adding creative movement, even if all you can muster is five minutes on your worst day. Yoga, dance, trampoline, music, ballet, anything that gets you out of your head.

8. Finding a really amazing therapist. Not just for you, but so those around you don’t need one too. I dove into Jungian therapy with Patricia Llosa to heal old traumas, which helped with my recovery of Lyme.

The catalyst to my recovery, that I was avoiding like mad, was leaving my beloved NYC. My old life just wasn’t working for me anymore and that was the hardest thing to accept. I was diagnosed in mid-2011 and I moved to Colorado March of 2014. I started hiking and enjoying myself just a little bit, not thinking about my treatments every minute of every day. Boulder is an epicenter of healing and integrative medicine and some “woo woo.” I needed the woo-woo. Woo-woo forced me to “let go.”

Healing from Lyme is not a linear process. You sort of go a few steps forward and one or two steps back, and around again.

When you’re confused about what to do next, stay connected to that thin piece of thread that hooks you to hope and the trust within yourself, one hand in front of the other. Trust that your center will guide you. This is what I needed to learn, I suppose, that links to the parts of me that were missing during my pre-Lyme diagnosis, when it always felt like something was missing, or things were not enough. I didn’t trust myself to know that I already had everything. I was already complete. Why do so many of us fight this innate knowledge of ourselves?

I still keep up with my practitioners. I speak with Inna quarterly to keep up on what I have going on and track progress. I do a lot on my own and revisit all of my modalities on the list I mentioned above when I feel under the weather. Today I am well, recovered and so much happier. I found that the mountains and the stillness could be healing on their own. I live in Denver now, because I am a city girl at heart and this is a perfect balance for me. I hike the trails on the weekends or take a bike ride.

This is what has worked for me. What works for you?

Listen to your center. Feed and nourish it with the things that are right for you. Leave the really crappy job. Go to Bali. Reach out to the friend or parent that you are angry with. Call the guy first, who cares? Cut loose from the baggage.

It’s hard to do or think of anything else but getting better, when you’re dealing with such an awful disease. But the small glimpses of the new, lit-up you on the other side can and should be a big part of your healing protocol. You will get better.


Author: Natalie Steiner

Image: Courtesy Natalie Steiner

Editor: Jean Weiss

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