Mariko F.

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LGB: You are one of the few people I’ve talked to who remembers seeing the tick that bit her and also got a bullseye rash. How long ago was this, and where were you?

Mariko: It was in 2003, and I was living in Lake Tahoe, Nevada, with my husband. I was hiking with our wolf-dog Bodhi when I saw the tick walking away from what would eventually be the bullseye rash on my arm. I didn’t think much of it at the time since there are plenty of ticks in the Eastern Sierras. It did strike me that it looked different from the ticks I’d seen—it was smaller and sort of red and black versus the engorged gray ticks I’d seen on dogs.

LGB: Did you get diagnosed right away? How long did it take you to get diagnosed?

Mariko: It took three-and-a-half years to get a solid diagnosis despite showing the bullseye rash to my doctor after I first contracted it. I remember he was holding my arm, looking at the rash—it was at the crease of my inner elbow—and he pondered it but didn’t know what it was. I also had a larger rash covering much of my torso.

It’s so obvious now that I had Lyme disease. But I was actually there to see him after having a near-death experience from something else, so he wasn’t thinking of infections because I had a lot more going on. It took a total of 16 doctors and alternative practitioners to finally find one who knew what it was. Thankfully, I had drawn out a picture of the bullseye rash to show all my doctors, so I knew exactly what it had looked like.

LGB: Were you working at the time? Did you have to stop working?

Mariko: Yes, I was building a new business in energy healing and bodywork therapy. I’d been practicing for five years at the time, and we had just moved from Flagstaff, Arizona, to Lake Tahoe, so I was starting over.

As far as when I stopped working, it wasn’t as gradual as you’d think. For me, it happened all in one day. I was injured by someone practicing alternative medicine without a license, education, or certification. This person had already gone before the state board to answer for practicing without a license, and I had no idea. This person had used their spouse’s medical license to obtain medical equipment in order to create their own practice. I ended up injured to the point of having a near-death experience.

I had sought out treatment from this person—not knowing they were unqualified—because I’d contracted Lyme disease three weeks before but thought I had the flu and just hadn’t gotten my energy back. My neck hurt, I had a constant headache, and I was totally rundown. I started to worry that I wasn’t bouncing back the way I should have at 29 years old. So that, on top of the Lyme, is what my husband and I believe created so much confusion around getting a diagnosis.

LGB: What sort of support did you have?

Mariko: My husband Chris and God. He was (and still is) amazing—my husband…and God. At only 25 years old, he picked up all of our responsibilities and supported us. We were newlyweds and had been married for a year and a half. We were so excited because we’d recently gotten hired as caretakers for a large estate on the lake, so we had a place to live and very little expenses at the time. We would tend to the house year-round and in turn just had to pay our phone bill, which was incredible timing because my medical expenses were about to skyrocket.

It’s hard to put into words how much I felt supported. We hadn’t been in Tahoe long, so while we knew a few people, we didn’t belong to the community. We had support, however, from my parents, my sister in San Francisco, and my mother-in-law in Atlanta. They’d all call me daily, which kept my spirits up and helped me feel less isolated.

But, honestly, the day-to-day, moment-to-moment support came from Chris and our wolf-dog Bodhi. He was my tether to this world, and without him I wouldn’t have gotten through it—my husband, not our dog. Well, the dog, too, but that was different. Bodhi was my constant companion during the years I was home all day by myself. He never left my side either.

Without Chris’s support, determination, and love, I wouldn’t be where I am today. He got me through it all and was my mental, emotional, and spiritual support during the most unimaginable moments of excruciating pain. At that point, the Lyme symptoms were nothing in comparison to what I was going through from the injury. The doctor I saw after it happened said it was as if I’d been electrocuted. My acupuncturist and mentor in Chinese medicine said it was as if my organs got cooked a little. It’s the most intense pain I’ve ever experienced, and I couldn’t imagine getting through it without his help and skills. His herbs and acupuncture healed me over time and were the only treatments I used to recover from the injury.

Something important about my NDE [near-death experience] is that I was told not to use Western medicine, which was out of my comfort zone, having spent five years working in hospitals. But I knew it was an important instruction for me to follow. The surprising thing was, the doctor I saw weeks after my NDE had also had an NDE years prior, so he understood the importance of following the instructions I received and honored the one to avoid Western medicine.

I also felt immense support from God. I’d dive back into the bliss of my soul that I experienced during death to escape the physical reality, and that was key to getting through it, too.

Chris fed me, carried me to the bathroom when I couldn’t walk, helped me shower, and took me to any and every person we thought might help, all while working full-time at a brand-new job. Eventually his job took us to Phoenix, Arizona, where he could better support us, and I would eventually find the doctor who diagnosed and cured me of Lyme.

LGB: Over the three-and-a-half years that it took you to get diagnosed with Lyme, what were the responses you got from doctors and alternative practitioners?

Mariko: Oh, you know, what a lot of us have heard: that I’m depressed and it’s all in my head. There was one internal medicine doctor, in particular, who looked me dead in the eyes and said, “You’re making this up. It’s all in your head, and you just need to go back to work full-time and have babies.” Looking back, he was totally right; it was in my head…the Lyme was headed to my brain!

Other times they’d just listen and not write anything down until I said something that they believed. I’d always tell them that I was not depressed because since my NDE I’d been in a constant state of joy and love, so how could depression feel so euphoric? I’d also show them the drawing of my rash, and many would only glance at it.

The best was when one would just be honest and say they didn’t know what was wrong with me or how to help. At least that gave us some hope that even though the doctor didn’t know, they didn’t flat out think I was making it up.

The alternative practitioners had different theories and were always supportive in whatever way they could be, even if they couldn’t get to the bottom of it. After about 10 to 12 months of illness in Tahoe, I went back to visit Flagstaff to see our old friends where we had been part of a community. Two were doctors practicing family medicine, and a few more practiced alternative medicine. At the very least, I knew they’d believe me since they’d known me for years.

After being there for a few days, other holistic practitioners came out of the woodwork when they heard I was back and very ill—some I had never even met. They helped in whatever way they could. One of my old clients even drove me to my appointments. Other practitioners helped me free of charge or at a big discount, including the friend I was staying with who also was a doctor.

I didn’t get the answers I was looking for during my stay, but I healed on a deeper level, and it got me through some rough times. I had reconnected with my community, and being a part of a community who believes in you is key to healing, even if it’s a community of one.

Despite so much generous help, I also remember a time when we had exactly $1.59 in our bank account and a lot of debt. That’s what eventually led to our move from Lake Tahoe to Phoenix. As you well know, this is an expensive disease, and we needed to go where Chris had more job opportunities.

LGB: Describe what it was like at your lowest point with Lyme.

Mariko: There was a time when I was sick that I’d completely forget what I was talking about in the middle of a conversation and no amount of reminding me would help to recall any of the conversation. I felt as if I’d just entered the room, even if we’d been talking for a long time. Other times I’d stare off into space for a little while, miss part of the conversation, then jump back to where I left off as if no time had passed. Sometimes one leg or both would just give out, and I’d have to lie on the floor, crawl to the couch, or have Chris carry me. At other times, my eyesight would go black for a few moments, then come back. Often I couldn't get out of bed because I couldn’t stand up or move more than a finger or two. Chris had to do everything for me, and the only answer we had was that I was depressed and making it up. My whole life was ahead of me, but by 32 I had trouble walking and talking, had nearly no community, no answers, couldn’t think straight, and was in pain 24 hours a day.

LGB: How did your body react to the move to Phoenix? Did you find a doctor there?

Mariko: Moving to Phoenix was a culture shock for both of us after living in the mountains for a decade, but we needed help and hoped to find the answers there. It was also necessary financially for Chris to take a job in corporate America with room to grow and good health insurance. When this all first happened, we weren’t insured.

But going from living on a six-million-dollar estate on a private road in Lake Tahoe to an apartment that was in a rough area of town was difficult, to say the least. My life went from lying in bed watching the waves crash on the shore on the days I couldn’t get out of bed, or sitting on our private boat dock watching catamaran tour boats passing by on the good days, to watching prostitutes walk by and a guy with an ax who stood outside the apartment gate yelling every night.

It still took another two-plus years before I met my doctor.

So three-and-a-half years after the tick bite and injury, I met Dr. Olya Stouk, and I began to get my life back. She’s a naturopathic doctor specializing in integrative family medicine and fertility who’s originally from Europe. I saw her weekly so that she could witness all of the symptoms since nothing was consistent.

I had no energy and was sick all the time. I was a magnet for all types of infections, from strep throat and pneumonia to bladder and sinus infections. This was a whole different level of having no energy, as you probably know. I had no reserves, so if I overdid it by something simple like talking on the phone, washing a few dishes, or getting the mail, I’d be recovering for hours or days. If I did something really big like going out to dinner, the recovery would take weeks.

My day-to-day life felt like I was existing with no purpose, no community, and no answers. I was losing the person I had been, and it was terrifying.

Then one day something changed. I can’t remember the exact moment I knew something was very wrong, but once I did I picked up my phone to call for help and couldn’t figure out how to use my phone. I turned it over and tried to figure out how to use it but had no idea what to do. It was like holding an alien object in my hands. I remember looking at Bodhi, our wolf-dog, and he looked back at me like, Yeah, I dunno either, but I’m worried about you.

I got up and checked my pupils in the mirror. Before I went into alternative healing, I worked as a patient care partner in the UCLA Medical Center Neurosurgery/Trauma Intensive Care Unit. I thought to do a little neuro exam on myself. I saw that my pupils looked normal and my face moved the way it should and I seemed to have equal hand and foot strength. I didn’t think I was having a major stroke, so I sat back down on the couch and waited for my husband to come home. I couldn't call for help or figure out how to turn the doorknob to get out, so I was basically stuck.

It’s interesting that part of my brain had enough reason to think to check my own pupils to see if they were equal and reactive. I also had enough reason to decide not to eat anything that involved using the stove or a knife since that could be dangerous.

As evening came and it got darker in the house, I tried to turn the lights on but to no avail. I pulled on the light switch, pushed it, tried to move it from side to side, but it wouldn’t turn on. I squeezed it hard between my fingers but never once thought to flip it up. I tried our lamps and kitchen lights, too, but couldn’t figure those out either. When Chris walked in the door, I was sitting quietly on the couch in the dark—still in my pajamas, my phone lying useless by my side.

That night, despite having some trouble speaking and being confused, I didn’t want to go to the ER. I had an appointment with Dr. Stouk the next morning, so I just waited until then. I just knew she’d have a solid answer, and I’d been let down by so many doctors that it didn’t seem like a good idea to go. Plus, since I’d already been sent back from death, I didn’t think skipping the ER would kill me.

LGB: What was the first thing she treated you with?

Mariko: So the next morning in her office I sounded like I’d had a stroke and couldn’t walk on my own. I can’t remember all the details, but I do remember her asking, “Didn’t you have a rash at some point?” To which I slurred out “circle…dot” and drew out the spot with my finger where the bullseye had been.

I stood in front of her with tears in my eyes because I’d declined so fast. I remember her saying in her cheery sing-song voice, “It’s okay, Mariko, I know what’s wrong. You’re going to be okay, don't worry. I’ll take care of you.”

She laid me down for a relaxing acupuncture treatment, and once I had calmed down, she left the room and must have flown into action. By the time my acupuncture session was over, she’d scheduled an immediate MRI, had consulted with a specialist in Europe—Switzerland, I think—called in a prescription for azithromycin to the pharmacy, and we did some lab tests.

She’d figured it out and had a plan, which was such a tremendous relief to everyone. The thought of that day still brings tears to my eyes over a decade later. I think her husband, who’s a neurologist, even took a look at my MRI. Again, that time period is very fuzzy, but I’m pretty sure he did.

LGB: Do you think the fact that your doctor is from Europe had something to do with you finally getting diagnosed with Lyme?

Mariko: Yes. She had medical training in Europe as well as the U.S. so that probably helped, especially with her perspective. But also since she’s from Europe, she knew other doctors there that she could consult with. But more important than all of that was that she talked and listened to me. She believed me.

LGB: What treatments did you do with this doctor?

Mariko: The first was azithromycin since it crosses the blood-brain barrier. I remember feeling so tired but in a good way—restful. Like my body was saying, Thank you! Finally, help is here. I can relax. I slept well for the first time in three and a half years. I stayed on that for a long time, but I can’t remember how long.

A couple of days later, she started me on IV treatments. She gave me different ones over the course of a couple of weeks to see how I’d react. I had a few high-dose vitamin IVs with glutathione and then a hydrogen peroxide IV, then a colloidal silver one. After my first colloidal silver IV, I was able to say two words in a row, slowly but without sounding like I’d had a stroke. So we stuck with that. I was lucky; the colloidal silver worked fast for me, and I continued to get colloidal silver IVs every other day for a while—I can’t remember how long—then we went to every week, then every two, then monthly. This went on for over a year. My parents came out for a while to help us and drive me to my appointments, while Chris worked to support us and pay for my treatments.

I wish I could say this is the right treatment for everyone, but it won’t be. Each of you will need to find your own path to healing. I’m just sharing mine in case it resonates with you. I’d absolutely recommend that you’re comfortable with the source of your IVs if you get them. My doctor got hers from a reputable source and that made me much more comfortable. I personally never took the colloidal silver sold at the grocery store.

One thing I will say that’s probably good for everyone is to cut out refined sugar. It feeds Lyme. Switch to stevia, monk fruit, or any other non-sugar sweetener that works for you. I even cut out most fruits except the occasional blueberry. It’s just not worth it for me and doesn’t make me feel good anyway.

I feel best on the candida diet. I’m pescatarian, and I don’t drink. I stopped eating meat when I was 13 years old but have found fish is a game-changer for my brain. Dr. Stouk has me on a lot more omega-3 nowadays. It’s also helpful in keeping inflammation down, and I do all I can to stop inflammation with my diet, which doesn’t mean I don’t eat brownies and ice cream. I just make them myself and use stevia and monk fruit for sweetener and avoid refined carbs. I also use coconut milk instead of dairy and prefer to use flax seeds instead of eggs in recipes. I like to joke that since stevia is known to kill Lyme and coconut is anti-candida, my ice cream is basically medicinal.

I also do a lot of fresh juicing. I prefer a blend of cucumber, dandelion, parsley, and cilantro—there’s no sugar, and it tastes great. It also helps keep inflammation down.

LGB: I think it’s really interesting that you’re not someone who researched Lyme once you got diagnosed, except to look at the symptom checklist. How do you think that served your recovery?

Mariko: I felt like learning too much about Lyme was a double-edged sword. On the one hand, I needed to know about it to be my own best advocate, and on the other hand knowing too much about it could potentially create an identification with it and weigh me down. I’d seen many people over the years become experts on their disease to a point where it didn’t seem helpful. I’d hear them talk about it as if living with it was a foregone conclusion. I noticed that they referred to their health issues as something that belonged to them. They’d say, my disease, my symptoms, or my pain. I always thought of the Lyme as separate from me—more like a parasite. I felt like Lyme had a really low vibration but also a will to live, so I needed to fight it in more ways than just with medicine. So it’s important to know about it; just make sure to keep your mind frame, vibration, and consciousness higher than it. Most of the time I was relentlessly positive and didn’t accept it as something that belonged to me. I’d also allow myself the time and space to break down and cry at the reality I was living in.

I remember the moment when my doctor suggested that I take up pottery to keep myself occupied since I was so sick and neurologically impaired. In that moment, I took it as her saying there was a chance I’d never be able to do much more than make a cup out of clay.

That terrified me, and I got serious about my mental attitude, affirmations, and positive outlook. In hindsight, she may have just been making an innocent suggestion, but it lit a fire in me and helped me create a disciplined mind frame. After all, there was no guarantee I’d recover the way I did just from the medicine alone. I had to participate in my own recovery, even when all I could do was lie down and endure the die off. At least I could envision a healthy life, repeat positive affirmations, or listen to inspirational music or talks.

In the beginning, some of our friends and family sent information they found on the internet, but I never looked at it—mostly because I couldn’t read! Chris looked a little, and it was all pretty discouraging. Basically, it said we’d spend about $200,000 to $300,000 in treatments, I’d probably never get my life back, and I might still die. Fantastic.

So no, once we saw what was out there, we didn’t look too much. I let Dr. Stouk be the expert and carry the weight of the disease. My job was to believe I’d be 100% well again and do everything in my power to manifest the life I wanted. Her job was to guide me through it. I think I’m the least-informed recovered Lymie out there.

I surrendered to the process not knowing much about my fate except that I wasn’t going to die just yet. I knew one thing for certain from my near-death experience: it wasn’t my time, and I had to go back and help people. So at least I had an assurance that I still had some life purpose. I needed that because after experiencing the blissful awakening during my own death I didn’t want to come back. And to have to come back only to be stuck in a body that didn’t work was heartbreaking and so frustrating.

And it wasn’t even a body I was familiar with anymore. I probably gained about 70 pounds from the illness, injury, and stress. I didn’t recognize myself. I’d gone from having an athletic body—I was an avid rock climber—to a sick and fat body, despite trying to eat healthy. It would take years to figure out the best diet for me.

When I was well on my way to recovery, I finally looked up Lyme and found a list of 75 symptoms online. I remember thinking, Well, I’ve had pretty much all of these except erectile dysfunction and death. Technically, I had died, but Lyme can’t take credit for that one. Plus, I didn’t stay dead.

“Co-infections” was a term I’d hear about much later, after I was well. I really let go and allowed Dr. Stouk to get me to the finish line. I knew enough about Western medicine and the lingo to drive myself crazy with what was happening and that caused fear, and fear fed Lyme in my experience. I realized that I couldn’t be both afraid of it and beat it.

All I needed to know was that I was getting better and better, and I think Dr. Stouk sort of shielded me from knowing how bad it was. I was living at death’s doorstep for so long. I was aware of how serious it was; I just didn’t want to know the full diagnosis. That would have been depressing.

LGB: What precipitated your move to Southern California six years ago? How did your body respond to this new environment?

Mariko: It was time to come home. I was born and raised in Santa Monica, California, and we missed living in a town that felt like home. We had been going to Encinitas for vacations and eventually decided to move there. It’s a perfect fit for us, and we get to be closer to my family.

As far as my reaction to being near the ocean, it’s wonderful. I had so many health issues living in Phoenix. I contracted Valley Fever, a fungal lung infection, about a year before we moved back to California. I got it when I went outside one night. There was a dust storm happening, and I didn’t know it. It just seemed windy to me. A few weeks later, I was sick with the flu and just got worse and worse. I was hospitalized twice, treated for a year, and had to use an inhaler for a few years after.

Everything’s changed now that we’re here. My health is good. I have a business now offering private coaching, meditation workshops, and retreats at MarikoFrederick.com. I’ve come full circle, and I’m grateful for every step of the journey, even the parts I crawled through.

LGB: Do you have any lingering symptoms or do any more treatments?

Mariko: I like to think I’m 99% well, but I still have my moments. I never say or even think, I’ve got Lyme, or that I’m sick. I just say my body’s different now because that’s the truth.

Life is different. Keeping inflammation down and being careful with food choices is a constant part of my life. A good day means something different every day. But I no longer define it by whether or not I’ve got an ache, gained a few pounds, or have a little mental fog. I don’t use my pre-Lyme self as the measure of health anymore.

I’ve got chunks of time missing from my past—even pre-Lyme. There are family events I don’t remember being at and concerts and movies I don’t remember going to. I was an herbalist at one time, too, and I don’t remember much about Chinese herbs now. Things I don’t remember come up all the time, and my husband and I just laugh and say it didn’t make the cut.

During most of the illness, my intuition was still very strong, so while I didn’t have a business anymore, I’d still get calls from old clients asking for a little advice or help here and there. That gave me a deep sense of belonging and purpose and has turned into the work I’m doing now.

I did have some issues this summer that were worse than they’d been in years with slurred speech and memory, so I went back for a couple of IVs to just make sure nothing got out of hand. Turned out, I wasn’t getting enough omega-3 after going vegan. So I started taking omega-3, eating fish, and taking phosphatidylserine.

It’s rare now but sometimes when I talk for a long time, like when I’m teaching a workshop, my brain will get a little tired, and I’ll slur a word or maybe forget what I was just saying. As long as I tell everyone what’s going on, they’re always supportive and patient with me. Most people don’t even notice when it happens. Honestly, it’s just funny to me at this point.

So the fact that I can get up in front of people, give a talk, teach a workshop, lead a retreat, and maybe just need a quick reminder or two of what I was talking about is a miracle.

Today I’m surrounded by a loving, supportive community who I can celebrate this life with. I’m living the way I only dreamed of, so the occasional slurring and forgetfulness is just a little part of how things are now. I have a sense of humor about all of it, and my perspective on health couldn’t be more different. I consider myself healthier now than I was before Lyme, when I was living in the mountains rock climbing, because the spiritual, emotional, and mental healing that’s taken place has transformed me.

LGB: You told me, “If you want to get better, it’s a spiritual journey.” This is something that makes sense to me now but definitely would have rubbed me the wrong way six-and-a-half years ago when I first got sick. How was this a spiritual journey for you, and why was that necessary for you to get well?

Mariko: I think since I started out my journey by dying, I had no doubt that it was a spiritual journey. I got the chance to experience who I really am and carry that essence back with me, which was an enormous blessing in helping me through the worst times. This body is temporary, and no matter what you do, it’ll die one day. Your soul will live on eternally, so assuming anything is just a physical lesson is too limited.

Nothing about going through this disease is just physical. It’ll run you through so many deep lessons and give you spiritual and emotional insights if you allow it to. We’re here to remember who we are as the soul and to live in the consciousness of that awakened state. That’s something Lyme can’t take from you.

My lessons from Lyme and death were so simple yet so hard:

Let go of desire

Be love

Live my truth

Serve all

It took dying to get the lessons and a decade of illness to understand them and become the version of myself who could begin to do what I came back to do. I’ve gone through indescribable pain, lost my health, my career, and was stripped of all I knew myself to be. We’ve had seven miscarriages, I’ve suffered a bunch of memory loss, and it’s all been worth it.

LGB: Lastly, from all that you’ve been through on your Lyme journey—from death to a full life—what do you think is the most helpful thing for folks who are really struggling right now to know about how you recovered?

Mariko: You’re not getting out of this the same that you entered it, so let that person go. You’ll likely grieve who you once were, and it’s a painful process.

Lyme is transforming you, making you better, more humble, generous, loving, and soul-centered. It may even help you identify less with your physical body and more with your soul. These are all good things that bring you closer to enlightenment. You’re not sick. You—the soul—are always perfect, healthy, and radiant, so try not to say you’re sick or tired if you can. Your body may be sick and tired—but you are a limitless spiritual being whose true nature is boundless love.

Also, you’re not alone. I know it feels that way, like no one can understand what you’re going through, especially since you probably look fine. But we do know, and we understand how you feel. You’re never alone.

I’ve found some folks are almost competitive about how sick they are versus someone else. Try and avoid this way of thinking or speaking. It won’t help. In fact, I learned to avoided talking about my health unless it was with someone helping me get better.

Do what you can to understand the deeper lesson and transformation you’re going through. I knew I was going through so much because some day I’d need to share it. I didn’t know if I’d be sharing it lying down or standing up, but I knew I would. Begin questioning your deeper purpose around this; it’s not happening to punish you. Maybe you’re just ready for a bigger transformation.

Have hope, transform, and never give up.

 
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The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority. 

Catherine Grace O.

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LGB: Let’s start in the light. Tells us about all the awesome things you’re doing with your life right now and what it’s like to be over Lyme.

Catherine: I love starting in the light as that’s so important to keep focus on the positive in life. When someone is suffering from Lyme, it can feel impossible to focus on the light but it’s vital to healing and shifting our energy.

My life today is vastly different from my life just three and a half years ago. I’m the founder of the Forever Fierce Revolution, an international movement with a mission to inspire and empower women at midlife and beyond. We have almost 6,000 members from around the world, and I manage a large volunteer team as changing a paradigm takes a village. We are actively working to shift the perception of older women to a frame that is vibrant, youthful, and relevant. I launched my blog, CatherineGraceO.com, which is centered around fashion as a medium to share my message of empowering and inspiring women of all ages. Finding my voice was the key to saving my life. I like to say that “I’m not changing clothes. I’m changing lives.”

In the past year, I’ve launched three large social service campaigns touching almost ten million in following. One was designed to bring together the millennial and midlife demographics to blur boundaries and end divisions. Last year, I launched Forever Fierce Media, a digital production company focusing on message-based content for national brands. We have produced several successful commercial campaigns for national brands. Our latest video campaign received 200,000+ views on Facebook alone! That was super exciting. I have my own talk show/podcast called Forever Fierce. We film weekly video shows with incredible guests to inspire our community to reinvent, rewire, and be relevant.

 

LGB: Where were you living when you first got sick? How do you suspect you got infected?

Catherine: I wasn’t diagnosed until spring of 2014 but my doctor traced the illness back over a decade. I had two cases of spinal meningitis that were ten years apart. That’s a common complication of neuro-Lyme, when the illness crosses the blood brain barrier. I was living in Chicago near the forest preserve. We would have deer in our front yard and pull them off my puppy. That’s most likely how I contracted the Lyme. I was really sick for a very long time, going from doctor to doctor, but no one would believe me. I would be sent away from doctors’ offices and even the ER with life-threatening conditions because I looked well. They thought it was all in my head.

 

LGB: For how long were you undiagnosed? How sick were you?

Catherine: I was in a very unhealthy marriage that had an enormous impact on my health. I was chronically sick with sinus infections, bronchitis, pneumonia, spinal meningitis, severe digestive issues that eventually required two different resections of my colon along with wicked insomnia that got to the point that I could barely sleep.

By the time I was forty-five, I had changed doctors. My new doctor told me that I had the medical file of an eighty-year-old woman and if I didn’t leave my marriage, the next thing would be cancer. So I left, and moved to LA to start my life over. I thought the health issues would be over then but they continued. That’s when I had the second abdominal surgery and the second case of spinal meningitis. I was in the midst of a Master's in Spiritual Psychology program and I had to drop out.

I switched to a doctor who had an integrative MD and treated many of the “last resort” cases of Lyme. The first time I met her she told me she was pretty sure I had Lyme disease and had had it for over ten years. Within four months, I would receive a positive diagnosis through blood work and begin treatment. Within a month of treatment on four different heavy-duty antibiotics, I started having full-body seizures that would last from three to six hours most days. I wasn’t able to eat or walk much of the time. My weight plummeted to 100 pounds and my organs began shutting down. On 11/11/14, I went through a Near Death Experience. Honestly, I was pissed that I survived as I’d been praying to leave. The suffering was out of control and I was at the end of my rope.

 

LGB: Can you say more on how the relationship with your husband affected your illness?

Catherine: I was married for twenty years and I’m not able to say much about my marriage or ex-husband due to his threats of legal action. Let’s just say my marriage was extremely unhealthy. I was in and out of the hospital and doctors' offices. I had to undergo major abdominal surgery and even eleven spinal taps at one point. I never had a husband by my side during any of this. He was completely unsupportive and would leave to go play golf while I would have to find my own way to the hospital in life-threatening conditions.

When my doctor told me I needed to leave him, I listened. It was really hard as I knew no one in LA other than my daughter. I was starting over from scratch and leaving everything behind. I cut ties with just about everyone including my siblings who weren’t there for me while I was dying. Lyme disease is so vastly different than any other illness. There is such a lack of compassion, understanding, education, and awareness. Most of my friends and family ran. I had my two kids, my ex-boyfriend and another male friend in my life. They were my rocks. I had a few girlfriends from Chicago that would call and check in, but that was about it. It was a time of immense despair. The despair was the worst part of the illness.

 

LGB: What were doctors treating you for and with leading up to your diagnosis?

Catherine: In 2012, I had my second case of spinal meningitis while in my Master's program. I went right back to school as I was determined to finish the program. In 2013, I was in the hospital for two weeks with a major abdominal reconstruction surgery. I had a volvulus during my marriage, which is a life threatening condition when the colon twists itself into a knot and cuts off your circulation. I had my large intestine resectioned. Later, I ended up having my small intestine resectioned as the scar tissue and adhesions from the first surgery led to a severe obstruction. What I learned later from my doctor was that Lyme disease attacks scar tissue. So, when I had the first surgery on my colon, which was an emergency surgery, I had an abnormal amount of scar tissue that led to keloids and had to be surgically removed in a five-hour operation.

What I’ll never forget is that at the end of the surgery when they were just finishing, I woke up on the cold metal table with the bright lights blaring and the room was freezing cold. I was in shock as I wasn’t supposed to be awake as the surgery wasn’t quite over. I ripped the NG tube out of my nose, jumped off the operating table and went running through the recovery room screaming “God, help me!” because the pain was so intense. I don’t know what happened after that but I woke up the next day covered in bruises. I know the doctors knocked me unconscious and wiped everything from the medical records as though it never happened.

I had a lifelong issue with insomnia due to PTSD and sexual abuse as a child. I didn’t know that I had Lyme disease at the time and we know it attacks the central nervous system. I went home after two weeks in the hospital and I couldn’t sleep at all. I was extremely weak and frail and could barely eat anything at this point. That’s when I switched doctors as I knew something was horribly wrong.

I remember going to this new doctor and sitting in her office and finally being believed. When she told me she was certain I had Lyme disease and had for over a decade, I burst into tears. It was such a relief to be seen, heard, and believed. Finally, here was a doctor who didn’t think I was crazy.

 

LGB: When you started antibiotics, what happened?

Catherine: I had moved up to Lake Tahoe and was going back and forth once a month to LA for my Master’s program. I was training as an equine therapist working with rescued horses. I wanted to start my own program for women who had been abused. I had just been diagnosed with Lyme the month before and was on four different extremely high doses of antibiotics. My ex-boyfriend came to move me back to LA for treatment and when he was there, the seizures began.

Suddenly, my legs started convulsing and kicking. He took me to the ER in Tahoe but they didn’t have a neurologist. The seizures would come out of the blue and last from three to six hours a day. They were full-body seizures resembling those of an epileptic except that I was fully conscious. They were so powerful that I could hurt someone if they came close to me. My ex-boyfriend would try to hold my limbs down because they were so exhausting and I was physically drained. They could happen day or night at any hour. I would be drenched in sweat. It was like running a marathon.

I ended up getting off all antibiotics in about a month but the seizures would continue for almost a year.

 

LGB: What state were you in psychologically when you had your near death experience on 11/11/2014? What would you say your attitude towards death was at this point?

Catherine: It was an extremely stressful time. I was so weak and debilitated by that point. My neurological and cognitive functioning was really low and my depression had spiraled into despair. Most days, I could barely walk or get out of bed. Sometimes, I wouldn’t be able to get out of bed or take a shower for a week. I looked nothing like my former self and I’d given up on caring about how I looked. I was so weak that many mornings I would simply try to lift my arm and I couldn’t. I would try to stand and just fall down. The days felt endless as I rarely slept and if I did, I would be awakened by seizures or crazy nightmares. I even had hallucinations and got to the point that I was terrified of the little sleep I could get because the nights were so brutal.

On 11/11/14, I was supposed to travel to Chicago as I was in the midst of a court case with my ex-husband for support. My doctor had forbidden me to travel as I was in a life-threatening condition but I begged her to let me go in a wheelchair with seizures to show the judge my condition. The judge had been led to believe that I was lying and I had to show her. Two hours before my flight, my lawyer withdrew from my case. I remember going into shock.

That evening, things started getting really strange. My friend Dave was with me but I told him to go home. For some reason, I needed to be alone. It was dark and I remember the house started feeling like the house in the Wizard of Oz. I had this feeling of terror come over me. I was too scared to sleep and so I went into the guest room. I spent the night with my body seizing all over the bed and my eyes were blinking all night long. I just waited and waited and counted the minutes until the light of dawn came. When I saw the sun beginning to peek through the blinds, I put my legs on the side of the bed and I melted to the floor. My body was weightless, like that of a ghost. I couldn’t feel anything. I was lying on the floor and couldn’t get up. I pulled myself across the carpet and into the bathroom. I’ll never forget the next moment—I’ve never shared this story publicly—I grabbed the bathroom sink and began pulling my weightless body up. Suddenly, I looked into the mirror and into my eyes and I was gone. I saw the reflection of the outline of my body leaving my body in the mirror. It was a reflection of me, all lit up much like that the ghosts in Ebeneezer Scrooge. I was leaving myself and walking outside the bathroom.

I fell to the floor and hit the cold tile. I pulled myself little by little back to the bed and tried with all my might to climb into the bed. It was almost impossible. Not long after, the phone rang and my ex-boyfriend was calling to ask how I was. All I remember saying is, “I’m not here. I’m not here.” He was so confused. We both were.

About two months after this, I went to see a woman who’s a “soul coach” and can see into other dimensions. She looked at me and had this look of total shock and awe. She had this expression I’ll never forget and she said, “Oh my God, I had no idea this could happen.” She looked way up above my head as though she was looking to the heavens. She said, “The vortex to the light is open. You’ve been walking around in a Near Death Experience for almost two months, which is impossible. You have a choice to make. Do you want to stay or go? You can leave now or I can close the vortex and you can stay.” I couldn’t process what she was saying. I told her to close it but I could barely speak. Once again, I was in shock.

Two weeks later, I went to see a deeply spiritual man who can also see into other dimensions as I couldn’t believe what had happened. He told me that it was true. That when the vortex opens to the light, the magnetic pull is so strong that your physical body can only last seconds to a couple of minutes. He told me that what I did was impossible, but I did survive it because the force of my will kept me here. He was someone I trusted immensely. It took me a long time to process what I went through and more importantly, why. I had been praying to leave. I was deeply spiritual and had no fear of dying. What I had was a fear of living.

It’s taken me a long time to understand why I survived. God decided it wasn’t time for me to leave. I’m making the most of my time left on earth and dedicating my life to leaving this world a better place.

 

LGB: After your NDE, you had an interaction with your daughter that flipped you from “illness to wellness.” What was that?

Catherine: After the NDE, I was still extremely weak and bedridden with seizures. It was spring of 2015 and the despair had returned. I was still here but I couldn’t understand why as the suffering wasn’t over.

My daughter came by one day and saw that I was in a dark place. She looked at me in exasperation and said, “Mom, what would you do if you were well?” In an instant, out popped, “I’d travel... I’d travel the world.” I was surprised by that moment of positivity. I remember grabbing my laptop and instead of searching for endless Lyme protocols, survival stories, or books and supplements, I started creating a bucket list. It wasn’t long after that I called a travel agent and told her that I wanted to book a trip around the world. I began dreaming, scheming, and visualizing and I completely stopped thinking about Lyme or spending time online focusing on my illness.

My daughter made me a set of “mantra” cards. Each card was handmade with pictures of me and sayings that were uplifting and filled with wonder such as “I wonder what new friends I’ll make today?” or “I wonder what amazing things are going to happen to me today?” or “I wonder what beautiful places I’ll be traveling to?” They were questions designed to open up my energy and get me to shift my focus from negative to positive or from illness to wellness.

In a few months, I called my landlord and told him that I was going to spend a year traveling abroad. My dream was to heal and to blog about my story. I wanted my own “Eat, Pray, Love” journey. Keep in mind, at that point, I was barely walking around the block but my dream was alive and well.

I didn’t end up traveling the world but it didn’t matter because I believed I could. I began doing a lot of inner work and focusing on my belief system, my attitudes, and my mindset. It wasn’t easy and I’m still a work in process as those old stories come and go, even today. But what I found was that I was trapped in the illness, in the story of Lyme and the suffering. Once I let go of the illness and began to shift my focus on wellness, I would begin healing rapidly.

 

LGB: When and why did you leave your doctor who was treating you for Lyme?

Catherine: My doctor was the doctor of last resort. She saw the sickest of the sick patients and the worst cases of Lyme. At one point, I had so many co-infections, illnesses, seizures and I was completely debilitated, she looked at me and said, “I don’t know how to help you.”

I realized I had to help myself and left her in the beginning of 2015. She had some disempowering things such as when we did the genetic testing. I had some very serious genetic issues. She looked at the results and told me that I had the genes nobody wants. I was shocked but too sick and weak to leave at that point but in my mind, I was already searching for alternatives.

 

LGB: You told me in an earlier conversation that “every person with Lyme has been disempowered by something.” What did you do personally to get empowered?

Catherine: Let me qualify that. What I mean is that every single person I’ve spoken to so far has resonated with my story and has opened up about their story. Every one of them has shared a personal story of being disempowered by someone or something in life. I was stunned at the connection that so many have been through trauma and abuse. There are many different forms of trauma. Trauma is unique in that it’s stored in our cells. When we experience trauma of any kind that overwhelms our brain’s capacity to process it in the moment, it gets forced immediately into our cells and our unconscious memory. Oftentimes, it can take years or decades for those memories to surface. There is a scientific connection between trauma, abuse, and health issues. There are a couple of centers that focus on the connection of trauma and Lyme disease. In my case, I know in my heart that the abuse was at the core of my illnesses and healing the abuse and trauma was at the core of my healing.

When I was in Chicago, the doctor who told me I had to leave my marriage also told me that I needed to empower myself. He could see the toll the abuse had taken. He encouraged me to begin martial arts. I started with Krav Maga. It’s a form of martial arts in Israel. It was so empowering to learn to use my energy and strength in that way. I remember the first time I flipped a man on his back by grabbing his ear. I looked at him on the floor and kept apologizing. He said, “You don’t apologize.” That was the idea. Up until then, I would apologize for just about everything in my life. I began a slow journey waking up to the power within and taking back my power on every level.

There was a point when I was lying in bed with Lyme, unable to walk and I was so sick, tired, and frustrated. I had been doing so much inner work and I wasn’t seeing the results, at least quickly enough for me. Laura, my coach, called me and I launched into a litany of “woe is me” stories. She wouldn’t have any of it and said, “You’re a creator and you must create.” I believe I used the f-word in response. I couldn’t function due to the seizures, how the hell was I supposed to create? She asked me if I knew the story of Matisse and I said no. She said, “Did you know that Matisse created his greatest works of art from bed?” I was stunned. From that point on, I changed my attitude and began focusing on the power of my mind and what I could do rather than what I couldn’t do.

It’s also really important to acknowledge that everyone with Lyme has their own unique path of healing. I never ever want to impose what worked for me onto anyone else. When people ask me how to heal Lyme, I always tell them that I have no idea how to heal Lyme. I only know how I healed Lyme and I share from my personal experience. If something resonates with them to help them on their healing journey, that’s wonderful but it’s not an expectation of mine. There are so many factors that go into healing, and timing is very important or “divine” timing. It really depends on when someone is ready to heal. With Lyme, it can be so easy to get trapped in the story and the suffering. I didn’t realize how much energy I was expending on staying sick. I made a conscious decision internally to change my energy and my focus and everything began changing quickly.

I want everyone to know that healing didn’t happen in an instant—only the decision to heal. After that, it’s been a process that continues today. I no longer have Lyme but the disease took a huge toll on me in many ways and the underlying trauma and abuse have been a lifelong journey to heal. I’m far more awake and aware than I’ve ever been. When those old stories resurface, I know what to do with them. It’s a process but it’s an upward trajectory that’s taught me so much about myself.

 

LGB: Once you started doing these things, your healing went relatively fast. Can you map out the timeline for us?

Catherine: I made the decision in January 2015. That was the timing of the conversation with Laura about Matisse. In April 2015, my daughter gave me the secondary jolt with the "mantra" cards and the conversation that led to my dream of traveling the world. From there, I started going on photo shoots with her taking the photos. I launched my Instagram account in July of 2015 and I haven’t looked back, only forward.

 

LGB: After launching your Instagram, many people with Lyme have reached out to you and you’ve spoken with at least a hundred “Lymies.” What were some of the commonalities you observed?

Catherine: It’s interesting. I was talking to my coach who’s become a close friend about the energetic, vibrational patterns she'd been seeing for a long time. What I’ve seen in the hundreds of “Lymies” I’ve spoken to is a common thread when it comes to certain emotional or energetic dispositions. Most are very kind hearted, empathic and empathetic, sensitive and compassionate people who have been giving and giving for most of their lives. They have been putting all of their “love and light” out into the world but not giving it to themselves. I woke up to the realization of how unkind I had been to myself and everyone I spoke with could personally resonate with that. When you’re filling yourself with negative thoughts, it has a massive impact on your health. You can fill yourself with all the green smoothies and healthy supplements in the world, but if you do that and fill yourself with negative thoughts, it will unravel.

It’s vital to be kind to ourselves first. Be aware of your thoughts about yourself. If you were to put your inner thoughts on a speakerphone, would you want people to hear them? I didn’t realize how much energy I spent beating myself up internally. How the heck was I going to heal when I was being so mean to myself? The cascade of hormones from negative thoughts that’s been proven and science backs that up.

One other thing I’ve seen is the commonality with “Lymies” on social media to use their stories to draw others in. They put their Lyme names on their IG feeds or make everything about Lyme. I remember several of my Lyme friends asking why I didn’t do that or use the traditional green hearts. It wasn’t that I wasn’t supportive or was judging any of it. I just saw that so many were absolutely vested in their Lyme as a big part of their identification. I worked with one woman giving my time to her for about a year and a half and finally stopped one day when she went on this public rant about how she would forever hold onto Lyme. I realized I couldn’t help her and was expending a ton of energy. I also see many falling into the trap of these Lyme support groups where there can be a lot of darkness and anger. I don’t like giving advice to anyone but in this case, my advice would be to ask yourself, Is this group is supportive? Are the people in it getting better? Do you feel better as a result of the group and is it an additive in your life? Many times the groups are draining and people are staying stuck. If that’s the case, I would leave and find a group that’s uplifting where you see inspirational stories and people who are healing.

 

LGB: I first discovered you on Instagram. Your 11/11 #metoo post knocked my socks off, and I knew I had to interview you for LGB. Thank you for being open about having experienced abuse and trauma in the past. The post made me think of something I read in one of Dr. Richard Horowitz’s books, and later heard him reiterate in an interview, that patients with pasts of trauma—emotional, physical, and sexual—are “the most challenging to treat. There is evidence that early trauma can damage the immune system, and it makes these individuals, once infected, more vulnerable to the worst ravages of the disease. However, I know that once they have gathered up the courage to go into their own pain and suffering and transform it, they will have an easier time healing.” [Why Can’t I Get Better?]

From your personal experience, what do you feel is the link between trauma and chronic Lyme? And what would you tell people who’ve experienced abuse, including sexual abuse, that are dealing with Lyme?

Catherine: There is an undeniable link. I believe the trauma and abuse were at the core of my illness, but healing it was at the core of getting well. One thing my doctor shared with me that I’ve never forgotten was that the immune system is the boundary of the body. When someone is sexually abused, that boundary is gone immediately and so is the immune system. I haven’t had a functioning immune system since I was a child. I still don’t to this day. I was diagnosed with PTSD when I was going through my divorce. I remember seeing a major infectious disease specialist who told me the PTSD was the real problem. The Lyme was only a symptom. I found that to be true. Heal the trauma and get help. Trauma is very unique and delicate. You have to have help to deal with something like sexual abuse.

 

LGB: You made a pretty radical choice to stop treatment and leave your doctor and embark instead on a path of personal empowerment. Have you ever received pushback or judgment from the Lyme community for this decision?

Catherine: To be honest, I don’t pay attention to any of it. I never, ever impose my beliefs or choices on anyone else. Each person must be empowered in their own decision-making process. I know how I healed. I know the decision was right for me.

I remember my daughter coming over one day when I had all the protocols laid out. I would go from the rife machine to the infrared sauna to the homeopathy protocols with the special diets, etc, etc... Every day was just pure desperation and survival. If I wasn’t at the doctor or in the hospital, I was following a protocol or researching how other people healed. I spent almost every waking moment in fear and desperation. You can’t heal that way. The energy of joy is a million times more powerful than any supplement. Most people with Lyme don’t remember what joy feels like. I sure didn’t. At one point, I was in the ER and the doctor was going to put me into the psych ward for telling him I had Lyme. He told me I was crazy and that Lyme didn’t exist. I was so angry! I called my daughter and she came and talked to him and I got admitted into the hospital. She tried to uplift me and asked me what music I wanted to listen to. I went blank. I couldn’t remember a single song that made me happy. I was dead on the inside. Joy was gone. I had to find a way to bring it back. Healing requires joy, laughter, passion, and purpose. Creativity is healing. Service is healing. Most people with Lyme think they can’t do any of these things. I say they can and they must.

 

LGB: Lastly, what would you say to those who may be reading this who feel like the transformation you made, from near death to thriving in life, is impossible for them?

Catherine: If I can do it, anyone can do it. Trust me, I’m not special or different than you. I didn’t think I could either until I did... the way we think is everything!

 
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The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority. 

Nora H.

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LGB: We first met back in 2014 when you came over to my house for a Lyme support group I’d organized from a Facebook post. You thought you might be in remission at that point. How long had you been dealing with Lyme up until then?

Nora: For a little over two years at that point.

 

LGB: What were your first symptoms and how bad were they?

Nora: Well, it’s funny, I was just talking about this to somebody today—probably other people with Lyme have had this experience—I realized after the fact that I had earlier symptoms that I had chalked up to other things. My acute symptoms felt like they really happened overnight. I woke up in the middle of the night with shooting pain in my wrist, and that was really odd. I decided to get up and get aspirin. When I stepped down off my bed, I had shooting pains in my ankle. The next morning, I slept through my alarm and was late for work because I was exhausted, which was also very weird.

The arthritis was very acute and in the space of a couple weeks had moved to a lot of major joints, and I also had fatigue. But looking back, I had also been kind of run down for a few months before that. I just chalked that up to my lifestyle: I was running a business and doing a lot of traveling. But I realize it was probably earlier symptoms.

 

LGB: Do you remember getting a tick bite?

Nora: No. That’s one of the things that’s so frustrating when people ask me; I don’t know when I contracted it. I have different theories about when and where I got it but I don’t know for sure.

 

LGB: So who was the first doctor you went to?

Nora: The first doctors I went to were at this medical center in Brooklyn by where I live, which I think honestly wasn’t used to seeing—I think they just looked at me and thought, this is a white woman who is very healthy. They had a lot of people in there with obesity and diabetes. I felt they didn’t take me seriously. They were like, “Oh, you sprained your ankle.” And immediately I’m like, “Both my ankles?!”

I found out later that they did give me a Lyme test, which came back positive but they didn’t call me. When I confronted them later, they said, “Well, it was non-clinical and it’s your responsibility to call about your lab results.” I didn’t get anywhere with them.

I went to my family doctor a few weeks later. At that point, I couldn’t move my arms any longer. The arthritis was so bad that I had paralysis in them. I had trouble sitting and standing too because of my knees. That doctor diagnosed me with a positive [Lyme] result. Then I was sent to a rheumatoid arthritis specialist because my general practitioner admitted that he didn’t know much about it.

But I also was so uninformed that I was relieved when I was told I had Lyme disease! I thought, Okay, it’s not Lupus. It’s not MS. I had done some research online about what else I might have. And I thought, Oh, this’ll just be some antibiotics and I’ll be done. I had no idea what was in store for me.

 

LGB: So who gave you your first antibiotics?

Nora: The general practitioner did. I think. Either that or he sent me to the arthritis doctor right away, and that guy said he would give me no more than two months of antibiotics. This is an important part of the story. They didn’t tell me anything. I knew nothing about herxing. Once I started taking the antibiotics of course everything got worse. And it was really scary. I was really cognitively impaired at that point. I remember talking to my business partner and saying to her, “I’m sorry by the time you get to the end of your sentence, I can’t remember the beginning of it.”

It was terrifying. I had no idea what was happening. However at the end of the two months, I would say I was almost entirely better. But I had done enough reading on the Internet that I felt very strongly that I had a late-stage Lyme case based on the severity of the symptoms I had had. I really wanted to stay on the antibiotics. I was on Doxy[cycline]. That was it. Nothing fancy. The rheumatoid arthritis doctor wouldn’t give me any more.

So I found an infectious disease specialist who was supposed to be very, very good. He was outside of New York City, so you would think kind of Lyme central and that he would have been the guy. But I was shocked that when I went to see him with my test results, he told me I had never had Lyme disease. And that I should get an HIV test.

That was really confusing and kind of terrifying. At that point I was out of options. No one would give me any more antibiotics. Somehow I just had this strong feeling that I needed to stay on them.

For about two weeks, I remember I was almost perfectly fine. I visited my sister in Los Angeles and went out with her. We were celebrating and I had a few drinks. I woke up the next morning and all my symptoms were back but much, much worse. I spent the next six years battling this disease.

I feel like if I had just been given a longer course of oral antibiotics from the get-go, I might have been interviewing with you years ago about being in remission instead of now in 2018.

 

LGB: How did you find someone who gave you long-term antibiotics?

Nora: This is important. I basically found someone to re-diagnose me with Lyme disease. Since I was told I didn’t have it, and Lyme had been ruled out, I was having all these neurological tests for MS and Lou Gehrig’s disease. Nothing came back. I had done research and I really believed that Lyme’s what I really had. So I found a Lyme-literate doctor in Middletown, New Jersey, which is quite far from New York City—it’s a two-hour drive—but they took my insurance and they would take patients.

I drew this graph that had color coded all the different symptoms I had had—they seemed at the time like such a crazy list of disparate symptoms: crippling arthritis that would move around from joint to joint, massive headaches, facial ticks, muscle spasms, exhaustion, brain fog, sensitivity to light and noise. I graphed this out over time and also the drugs I had taken. I gave it to the doctor and she immediately said, “This is amazing because I know from this exactly what happened. You have Lyme disease.”

I also advocated for the IV at a certain point, and she was only going to give it to me for a month because that was in her experience the longest people’s insurance would cover it. I was shocked that she wasn’t giving me an option for longer. She said, “Well, you don’t have to drain your savings.” And I said, “Well, I don’t see why I would ever need money if I’m too ill to ever be able to spend it.” I was willing to take the chance that insurance wasn’t willing to cover it and cover it myself.

 

LGB: When I met you in 2014, you felt you were possibly in remission. What treatments had you done at that point?

Nora: I kind of did have a remission and then fell out of it—or had a false remission. I had done IV at that point for 9 months. First I did Azithromycin, and then probably the last four of five months of that Rocephin, which I had a much better reaction to. I also had aspheresis done at this clinic in Cham, Germany, and I saw a real improvement from that. When I met you, I think I was just on supplements.

 

LGB: What changed?

Nora: I hate to say this but I had been in a relationship that had become really unhealthy and had a lot of stress in it. One day I woke up and my Lyme symptoms were back, kind of at the end of that relationship.

I started seeing Dr. Bernard Raxlen. He put me back on oral antibiotics probably for four months but my fatigue and brain fog didn’t move. So we decided to go back on IV. He hit it much harder than the other doctor. I was on 500 mg of Rocephin twice a day for about another six months. And I was also treated, like you were, with Mepron. I was on Mepron for nine months as well as some orals because Raxlen believed I had never been treated for Babesia or Bartonella properly. That’s why I had that relapse because the Lyme was sort of put in check but the co-infections weren’t. I guess there was something to that.

 

LGB: We’re friends so I know that you worked throughout this whole Lyme ordeal. How were you able to do that with such massive brain fog and fatigue? Also, tell us what you do!

Nora: I don’t know. I honestly don’t know. My job requires me to be very present and it takes a lot of cognitive ability. My company ImageThink creates live visual storyboards at corporate meetings. That means that you have to be listening to what people are saying, synthesizing what they’re saying, deciding the important parts, and really quickly drawing the pictures of it out on massive, mural-sized boards while they watch you. It takes a lot of physical stamina because you’re standing up and drawing for hours at a time. It also takes a lot of mental ability. When the brain fog was really bad, I stayed in the office. My business partner at the time was very understanding and covered it. But honestly I felt like I probably accomplished in a day what would take someone two to three hours to do.

I was lucky because I worked for myself because I don’t think in other circumstances I would have been able to hold down a job for part of that time. I fortunately had other people help me.

 

LGB: It sounds like there were some things your insurance covered. I imagine going to Germany was something they didn’t cover.

Nora: No, they didn’t. You have a specialty pharmacy when you have IV. The pharmacy I was using Infuserve was very, very good because they would submit all the bills to insurance. But it was really freaky because I wasn’t getting any bills for a long time, so I wasn’t sure how much I owed. In the end, Aetna ended up paying like 80% of it for the entire nine months.

When I did IV again, I didn’t go through that specialty pharmacy so I didn’t have nearly as good of results with the insurance, even though that pharmacy was cheaper. In the end, I think Infuserve was a better value because they were big advocates and really helped out on the insurance end. At that point I was probably not well enough or on top of it enough to manage. So the second time around I paid a lot of money: like a couple hundred dollars a treatment a day.

 

LGB: Wow. So that was when you were on it with Raxlen. How long were you on it with him and why did you go off?

Nora: About five months. I had a Hickman port in my chest, and I was lifting weights, which apparently you would think you shouldn’t do [laughs]. I tore a stitch and it started to come out. So we had to pull it out anyway.

 

LGB: That’s when you went off for good?

Nora: I went off it for good.

 

LGB: After you went off IV, Raxlen treated you for co-infections for a while.

Nora: Yeah, I believe he treated me for the co-infections both before the IV and after. He treated me for Bartonella. The Babesia treatment took the longest, as you know. Right?

 

LBG: [laughs, says an expletive] Forever.

Nora: Forever! It’s so frustrating. And that’s also a very expensive medication.

 

LGB: Aetna didn’t cover that?

Nora: It did but I had a deductible so the first bottle cost $1000.

 

LGB: When did you stop seeing Raxlen?

Nora: I don’t know if I ever officially made the decision to stop seeing him. Oh, I should also mention, so people don’t think I just did antibiotics, that I also saw an acupuncturist weekly for years and also tried Dr. Zhang’s herbs.

 

LGB: But you don’t go to Raxlen any more.

Nora: No, I don’t. It’s really hazy to remember. One day I just stopped taking the Mepron because I was tired of it and I seemed to be doing all right. And then it was like, Let’s wait and let’s see. What I really wanted that I didn’t get from Raxlen was quantitative data. I wanted there to be numbers. I kept wanting him to do my CD57 test. And he kept saying, “That’s not a very good measure.” But I wanted a result, I wanted a number where we would make a decision: this is a marker and you’re in the well zone. I never had a doctor who had that.

For me the biggest thing wasn’t getting from the worst I ever was—let’s say about 10%—to 70%. When I was at that 10%, I had no energy, no vitality, and felt like I was often on a planet that had a completely different sense of gravity, like Mars or Venus. It was so hard to move my body. Even my thoughts were heavy. It was so hard to think. One of the hardest things was I stopped being able to read, and I used to be a big reader, and laying in bed and not being able to read was pretty miserable.

If that was my lowest point, it wasn’t hard to get to 70% or 80%. That last part, that last 20%, to get back to who I remember being took me years. I could function but all I could do was basically go to work, work on my business, come home and just collapse. Or I would feel like I was not entirely enjoying myself because I would just be pushing through so much exhaustion. My thoughts were cloudy. I mean, I had brain fog for years and I hated it.

It was really, really hard. I did a lot of things to try to fight for that last 15%, 10% of what I thought was restoring my health. When I finished with Raxlen, I wasn’t there. I had a friend who had a thyroid issue—she had Hashimoto’s—and the symptoms were sort of similar and she was seeing this naturopath. So I went to see her. She did muscle testing and put me on a really restrictive diet and supplements. But I had been already taking supplements! There was a point in time I took 84 pills a day. Anyway, I stuck with the supplements and with this really restrictive elimination diet. After six or seven months, it made a really big difference.

But every once in a while I would have these relapses where I’d get tired again or foggy again. It would seem to come out of nowhere and last for a few weeks. It was so disheartening. Raxlen and my theory was those mini-relapses were from candida. Those were hard to weather because I would feel good and think I was out in the clear, and then I would have a setback.

I was having a period like this and met an energy healer who told me about a woman who had Lyme and was using this frequency machine [FSM]. I interviewed with the woman but wasn’t really sold on it. The machine cost $3,000. A week later I got a check from the IRS saying they made a mistake on my taxes from the year before, and the check was for $3,000. At that point, I felt so frustrated. I didn’t know what else to do and felt like I was running out of options. So I got this machine, and I have to say that this machine has really helped me. Mostly I do it for maintenance like for liver function, thyroid, endocrine. I’m not even running the Lyme protocols. It’s mostly, I think, refortifying my system.

 

LGB: Do you have any lingering symptoms?

Nora: If I cheat on my diet. I definitely can’t tolerate alcohol very well or sugar. And sometimes I push that a little too far. Now my diet is gluten free, sugar free, low dairy. So it’s not that extreme any more. I still take a lot of supplements every day, but definitely not 84 of them. A number of them are supplements that I think everyday people would take, like a lot of omega-3, turmeric, vitamin D.

 

LGB: Thanks for taking us through all that. You’ve been through a lot. And I’m sure a lot of readers can relate. How did you personally keep going through all that?

Nora: It’s been six years, so there were different periods where it was much more extreme and I used different tactics…

 

LGB: How about for the most extreme period?

Nora: The most extreme was when I had paralysis. I thought maybe I had MS, and they didn’t really know. No one still had explained herxing to me. Of course I got really sick after I started the IV. At that point I was 32 and I was more concerned that if this is the shape I’m in when I’m 32, what is it going to be like when I’m 42 or I’m 52? I was really more worried about my future. And I thought, okay, at any point I can decide I can’t take this, and I’ll just check out and take my own life.

And I know that probably sounds really dire but I was in such a bad state that that was a comfort to me. I don’t have to suffer with something if I don’t want to.

And at another point in time I thought, okay, if that’s the case and I’m really going to be even more disabled in a decade, I’ll have time to feel bad about it then, so I’m not going to think about it now. At a certain point I realized that my mental attitude was going to be critical to helping me through it and I just wanted to survive. So I would force myself to have more positive thinking as almost like a drug. I mean, I just threw so much spaghetti at the wall trying to get well, and that was just another thing I did. I really tried to just treat it like a tool and think about: How could I possibly get better if I was feeling sorry for myself or if I was feeling bad?

Another thing is I think the stage people go through in grief where you want to be angry and feel like “this is so unfair!” and “why is this happening to me?” I almost felt like I skipped that phase because I was so sick and my brain fog was so bad at that point. I just was really, really focused on solving the problem and making myself well. That took all the mental energy I had. I didn’t have the rest of the time to feel angry about it in a way.

 

LGB: I think what impressed me most in knowing you is that even though you were really, really sick and had every excuse to drop out of life, you didn’t. You and I have talked about this. How do you feel keeping your business, working, and traveling a lot helped or hurt your recovery?

Nora: I don’t know; it’s so hard to say. I’m an artist but I also have this really analytical mind and I realize this story’s not very scientific. If this were an experiment, I’d have way too many variables. But I was also impatient and I wanted to get better, so I wasn’t going to do one thing at a time. If any of it works, that’s all I care about. So it’s a little hard to say what worked and what really didn’t.

I’ve heard people say—I think this was a man you interviewed—who said, “People who stay sick with Lyme are type A.”

 

LGB: Yeah, Scott [Forsgren] said something along those lines.

Nora: But then I also read this book where they interview different doctors about how to get better with Lyme and some doctors said, “The people who get better are the ones who keep pushing and pushing through it.” So I don’t know! Maybe that’s what helped get me through it or maybe that’s why it took me six years to get through it. I don't know.

I just know that it was a really big challenge because I’m not someone to ever sit and take it easy and be sick. There were certainly times where I had no choice. Perhaps I didn’t give myself enough rest. On the other hand, it gave me something to want to get better for and it gave me something else to do. Once I was at a more functional state, it helped me reframe my attention from being a person who was sick from Lyme to a business owner or a person who was traveling—so I did! I packed all my IVs in cooler bags and took them to Mexico when I had a wedding to go to. I traveled with all the syringes. I did that. That’s just kind of who I am.

I will say, when I got sick it was one of the happiest times in my life.

 

LGB: Same here! I had a doctor tell me that happiness can be a source of stress and that’s what triggered something in my body…

Nora: Crazy! Anyhow, I’m not dismissing some of these other thoughts. My naturopath told me, “People who have bacteria like Lyme have repressed emotion and repressed anger.” Maybe there’s something to that or maybe there’s something to that guy saying, “Oh, it’s all those people who are really hard on themselves and are really type A.”

At the same time, I would have also have thought that when I got sick, it would have been a time of a lot of bad emotional stress and psychic stress in my life. But I was on top of the world when I got sick. I was training with a trainer three times a week and I was so happy. That’s what was so hard, I think, is that I was just struck down literally out of the blue.

 

LGB: Do you feel like you made meaning at all about what happened to you?

Nora: I’m so glad you asked that question because I really wanted it to be meaningful. At one point, I remember laying in my bed and thinking, If there’s a lesson out of this, this is so painful, I don’t want it to be wasted. And at the time, I had a really hard time figuring out what the lesson was other than it [expletive] sucks being sick. But it was almost too much to put on yourself at the time. Being that ill—and just trying to survive and trying to get better—and also trying to find the meaning all at the same time I think wasn’t realistic. But I desperately wanted to connect it with something. I think it gets easier to find meaning when you get through it a bit. It’s a big task to put on yourself when you’re in the thick of it.

I feel like I’m still sort of searching for that. I had a professor I visited who had been battling cancer and he had “chemo brain” which I think is very similar to Lyme brain. He said this beautiful thing to me. His comparison was that when blind people lose their sight, their hearing improves. He felt that losing some of his cognitive ability had opened up an emotional intelligence for him that he didn’t have before. I love that because I think that was the same thing that happened to me. Reframing losing some things but regaining other things has been helpful. I think it opened up a whole spiritual journey for me that I would not have been on at all.

Losing the signifiers of your identity so completely, having that stripped down is a pretty profound experience. My whole life I had been recognized for my intelligence. And more than one person had said to me, “You have more energy than anyone I’ve ever met.” And so I was this person who was always on the go. I was this smart person. I was super fast. And I lost all of that. I had to figure out who I still was when I wasn’t that and get in touch with that. If you can get in touch with something that is beyond circumstance, I think it puts you in a much better place in moving through life. 

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The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority. 

Antone D.

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LGB: Where were you living and what were you doing when you contracted Lyme disease?

Antone: I was a California state park ranger/superintendent living in Armstrong Redwoods State Park. I was called out to an emergency cliff rescue of two individuals stranded on a beach below a steep cliff. The tide was rising, and they had no way to seek safety without being airlifted by helicopter and cliff-rescue personnel. There was a deer path through tall brush that I used to get to the cliff. When I returned home to shower, I did notice ticks on my clothing. I did not notice a tick on my body.  

 

LGB: What year was this? How old were you at the time?

Antone: It was 1991, and I was 46 years old.

 

LGB: Did you remember getting bit by a tick? Did you get a rash?

Antone: I do not know when a tick bit me. I got a few dollar-size rashes on my back about a week after the above event.

 

LGB: Did your symptoms start right away? What were they?

Antone: I started getting dizzy spells, knee- and hip-joint pain, and brain fog about a month after I knew the rashes were on my back. Because I was in a position of leadership I was uncomfortable speaking in public, attending public events, and even interacting with park visitors and staff. The brain fog was the worst!

 

LGB: Had you heard of Lyme disease? Did you suspect that’s what was happening to you?

Antone: I had heard about Lyme disease because, as a park ranger, we were told about the possibility that ticks in our area of the state may carry Lyme disease. I knew about the bull’s-eye rash but not about the dollar-size rashes that are also a sign of Lyme disease. So, I never considered my symptoms were a sign of Lyme disease.

 

LGB: What did doctors think you had? What was your experience with doctors like as you searched for a diagnosis?

Antone: I was in Laguna Beach, California, with my husband when my knees swelled up so much that I couldn’t walk, and I was in a lot of pain. When we returned home, I went to my doctor, who told me it couldn’t be “lime” disease (she didn’t know how to spell Lyme). So, I was tested for lupus and chronic fatigue syndrome. I was then told that I might have psychological problems. My symptoms continued to get worse. I was having increased joint pain, fatigue, and memory problems. So, back to the doctor I went. I told the doctor that I thought I had Lyme disease and requested a referral to a disease specialist.

 

LGB: How long did it take to get diagnosed with Lyme disease? How were you finally diagnosed?

Antone: I saw Geraldine Taplin, a local disease specialist, in 1992, one year after I noticed symptoms. The disease specialist sent my blood work to a specialty lab in Lyme, Connecticut. When the results came back, she called me at 11 p.m. one evening and told me that I had Lyme disease because the blood test showed I tested positive for the disease with very high numbers. She then requested that I begin intravenous antibiotics immediately. She requested a home health nurse come to our home to insert a temporary line in my arm, so I wouldn’t have to have a needle inserted each time I needed more antibiotics. My husband came home every day for weeks at a time during his lunch hour to change my IV fluids. 

 

LGB: What Lyme doctor did you go to for treatment? Did he or she give you more antibiotics?

Antone: Dr. Taplin referred me to a Lyme disease specialist in San Francisco, Dr. Paul Lavoie. We drove to San Francisco to see Dr. Lavoie monthly for over a year. Eventually, I was off IV antibiotics but put on oral antibiotics that I took for 10 years.

 

LGB: Were you able to work? What changes did you have to make to your job?

Antone: Because I was a state park ranger and a peace officer, I was not able to work for several months. I eventually gave up my position as a ranger and took a position as a regional administrative officer in Monterey, so I could be close to home. I was accommodated by being able to work four days a week because of the fatigue. My ranger career was over.  

 

LGB: Did you have anyone to support you?

Antone: My husband and my family were very supportive and understanding, especially with my memory problems. They also knew I felt fatigued easily so understood when I needed to lay down or sleep.

 

LGB: How long did it take you to get well?

Antone: My active disease lasted for 10 years, but during that time I had very few symptoms. The knee-joint pain lasted the longest. The memory and brain fog lasted a few years, but I understood the cause, so I was able to live with it. I also requested that I be tested for early-onset dementia, so I wouldn’t be concerned with that diagnosis. Eventually, all symptoms disappeared. I never went back to being a park ranger, but I did retire from the park system in 2004. I am now a realtor in Carmel, going on my 12th year. My husband and I travel the world and enjoy long hikes and adventures with our grandchildren.

 

LGB: What do you think kept you going through those 10 years?

Antone: Dr. Lavoie gave me these words of encouragement: “You’re not going to die from Lyme disease. You’ll get over it, but it will take time.” I’m 72 years old now, and I get to use “Lyme disease” as an excuse for my forgetfulness!

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The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority. 

Amy S.

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LGB: When did you first start having symptoms related to Lyme disease and co-infections? How old were you at the time?

Amy: I think my first symptoms were in my early 20s, but looking back, I can see some that might have come before. I had mono in high school and often wonder if it was really just mono. It wasn’t until my mid-20s that I was really hit with symptoms I couldn’t live with.
 


LGB: Do you remember getting a tick bite? Where do you think you contracted Lyme?

Amy: I don’t remember getting bitten, but I do remember getting a terrible flu after hiking, the same year all my symptoms started. I was hiking in one of my favorite places on earth, in Ojai, California—it’s a very tick-infested area.

 

LGB: What were your initial symptoms? What did doctors think you had? Did you do any treatments?

Amy: My first initial symptoms were nausea, shingles, and a few things that seemed unrelated. Doctors told me it was probably hormones. I had a bunch of testing done that showed nothing major, so I kind of just lived with it and lived my life.

 

LGB: How long did it take to figure out that Lyme and co-infections were the underlying cause of your symptoms? Who suggested that they were?

Amy: I was diagnosed with Lyme seven years after my initial symptoms and two years after I became bedridden with pain throughout my entire body. By that time, I had a ton of symptoms, including brain lesions, neuropathy, arthritis, and more. Ironically, the way I was diagnosed was by being treated with hyperbaric oxygen for something totally different. The director of the clinic recognized my symptoms and sent me to an LLMD [Lyme-literate medical doctor].

 

LGB: Did you do antibiotic treatments? Alternative treatments?

Amy: I did antibiotic treatment, alternative treatment, and everything in between!

 

LGB: When and why did you decide to try an experimental stem cell treatment in India? Did you know anyone who had undergone it for Lyme disease?

Amy: I went to India because nothing had worked, what I considered, “enough.” Everything I did helped get me “slightly better,” but I wanted to be healthy. I was the first Lyme disease patient to go to India for stem cells. My doctor told me it might kill me, and I went anyway.

 

LGB: For those not familiar with embryonic stem cell treatment, would you mind briefly explaining what it is and the idea behind it?

Amy: The idea behind stem cells is to repair the immune system and the damage to muscles, glands, and organs that Lyme and co-infections have done to the body.

 

LGB: Did you go to India alone? What was your experience like, being so far away from home and from your medical team?

Amy: My parents went with me for the first six weeks (I was there for almost nine). It was a lot of crazy ups and downs. Most of the time, I was just trying to stay sane with a new culture, food, and doctors who didn’t know about Lyme. I cried through a lot of every day, feeling scared and hopeless. Other times, I embraced India and really flourished. It was like I was living two lives at the same time. Sometimes I was a wreck, and then five minutes later I’d find a way to be okay. I think life is like this in general, though. Looking back, I think I was kind of crazy to go! Ha. But I’m glad I did.

 

LGB: Did the stem cell treatment help you? How did you feel when you returned home?

Amy: The stem cell treatment definitely helped me. I felt almost like a new person when I got home and was ready to get back to my life and move on.

 

LGB: After a year of being relatively well, what started happening that made it apparent that your journey wasn’t over yet?

Amy: After about a year, the symptoms started to return. And it just got worse from there. I never went back to where I began, or anywhere close, but I could see that I was on my way. I was devastated. It was like my immune system and body were unraveling before my eyes—again. I realized that if stem cells and a new immune system couldn’t repair my body and keep it healthy, that this journey must be about more than just my body. That was a huge epiphany for me.

I realized that if I wanted to heal completely, I needed to address whatever the common denominator of the illness was. And when I looked back, I realized that there was only one: me. I had always chased viruses and bugs and my unruly immune system, but I had never addressed the me that was at the center of it all.

 

LGB: Had you been resistant to thinking about mental or emotional issues as contributors to what you were going through physically? What was your evolution of thought on this?

Amy: I always thought I was a positive person, had a good attitude, tended toward being optimistic—and that was all true. But it’s not enough to keep you well. I definitely wasn’t open on a deep level to looking at myself, my patterns, and relationships to see how I was affecting my own health. I was always more about proving it wasn’t “my fault.” Then I came to the conclusion that if I was part of the problem (and who cares if I was?), then I could be part of the solution. This was huge for me! I finally cared more about getting well than about my ego.

 

LGB: How did you start learning about energy systems and the energy body? Did you teach yourself?

Amy: I did teach myself. I read books. I went to an acupuncturist for a bit. I basically just became familiar with that part of my body—my energy body. I never really knew much about it before.

 

LGB: What did you discover about the energy body in relation to physical health?

Amy: Our energy body directly influences our physical body. Blockages in the energy system occur long before physical symptoms do. So, if you address the energy system, you are in effect addressing the root of where physical symptoms come from.

 

LGB: What energy techniques helped you heal? Did you come up with any on your own?

Amy: I used Emotional Freedom Technique (EFT) and Donna Eden energy medicine a lot to start. Then I came up with my own ways of clearing my emotional blocks that contributed to stuck energy: chakra tapping, subconscious-release scripts, tracing over certain parts of the body, etc. I made up a bunch of stuff not knowing what I was doing, but it worked!

LGB: When do you feel you healed “permanently and completely”? How long was this after you contracted Lyme and co-infections?

Amy: I wasn’t healed completely and permanently until I really let go of old emotions, beliefs, and patterns. That is the definitive point where my nervous and immune systems really healed. I’d say it was about six or seven years after contracting Lyme.

 

LGB: Do you think if you had discovered energy therapy sooner, you would have still gone to India? Likewise, do you think if you had initially addressed your energy imbalances, you could have foregone antibiotics?

Amy: It’s so hard to say now. I think that the way I did it was the way I was intended to do it. I had to learn and grow in the exact way I did in order to get where I am today. But if I knew what I know now, I definitely think it could have unfolded differently. I don’t think there’s anything wrong with medical treatment at all. It’s important to support the physical body in the ways one feels best. But I definitely think if I did the emotional work first, I would have gotten much better, much faster and without going to the extremes I did.

 

LGB: What would you say to readers who might feel overwhelmed, or even angry, upon hearing that the treatments they are doing—whether antibiotic or alternative—may not be enough to get them well?

Amy: I’d say that it’s legit to be angry, but it won’t help you heal. At some point, you have to decide what’s more important: embracing what is and healing or digging your heels into the ground. For some people, it will still be the latter, but perhaps the time will come when it won’t be. I think, for me, I had to really just say “F- it!” and be open to everything. Because by not looking inward, you are only blocking yourself from the thing you want most. And we each deserve more.

 

LGB: In a similar vein, a lot of what you say may be triggering to folks who were invalidated, sometimes for years, by doctors who told them that their symptoms were all in their heads and who really had to fight for a Lyme diagnosis. I know this was the case for me. Also, for me, after I finally got my diagnosis, I experienced “spiritual” people making offhand comments that I had “manifested” my illness. This triggered me much in the same way those doctors had, in that both felt like they were blaming me for this awful thing that was happening. When I struggled to get better, there were times when I felt like a spiritual failure when I didn’t improve or had setbacks. Do you have any thoughts on this?

Amy: My personal belief is that we absolutely do contribute to our situations, but that’s totally different from it being our fault. Most of the time, it’s our silly subconscious minds and not the conscious “us” at all. There are all kinds of forces—beliefs, emotions, toxins, etc.—that go into the illness process. I used to be so defensive about it being my fault, but then I was finally like, “Even if it was, who cares? Why am I wasting so much energy trying to disprove that? What does it change?” My simple answer to your question is that shit just happens. Done. That’s all there is to it. We need to focus on shifting things from there to wherever we want to go. I’m going to leave it at that because I think most of us overanalyze and put too much emphasis on the why. And it doesn’t need to be analyzed to death.

 

LGB: When did you start working as an energy therapist for people with chronic illness? Are there common beliefs or emotional patterns you find that your clients with chronic Lyme share?

Amy: I started full-time in 2012, and I couldn’t love what I do more. It’s funny because I never imagined I’d be doing this. But here I am. Yay. Some of the most common patterns I see:

  •       Stuffing emotions
  •       Needing to be perfect
  •       Worrying about other people more than themselves
  •       Not feeling safe in the world
  •       Not being their true selves
  •       Holding lots of fear

The great news is that all of this can be shifted, let go of, and transformed!

 

LGB: Would you mind giving us an example of how you use an energy technique to clear a concrete physical symptom?

Amy: One example is my technique the Sweep. It’s a subconscious-clearing technique (a script I wrote that the user repeats) that allows us to gently tell the mind to let go of whatever it’s been holding onto. Let’s say, for example, someone has a lot of pain. That is often linked to a subconscious belief of deserving to be punished. The Sweep is a technique that I use to help reprogram the brain by letting go of that belief and installing something more positive like, “I deserve to have a good-feeling body.” It’s all about giving the body permission to let go and a new “rule” to follow that aligns with health versus illness.

 

LGB: What role did fear have in your illness experience? Also, I’ve noticed you say “illness experience” instead of saying something like “my Lyme disease.” Would you mind explaining your word choice?

Amy: Fear puts a huge, huge stress on the immune and nervous systems. It essentially keeps you suspended in fight, flight, or freeze. For me, I was afraid of everything—not being in control, not being perfect, being sick, being healthy, my parents dying, people judging me, on and on and on. Health and healing are all about being in a relaxed state, and fear causes the opposite. As I released fear, I was not only happier, but my body really began to turn around.

I use “illness experience” and “the disease process” a lot because I don’t want to “own” anything that I don’t want. When people say “my Lyme,” they are sending their bodies/cells a message that’s the opposite of what they are trying to achieve. It’s such a little shift in language but can make a big difference.

 

LGB: Are you ever afraid of having a relapse?

Amy: No. But I used to be. That’s all a belief though, and the Lyme community corroborates a lot of it. Your belief about how delicate you are needs to be reprogrammed. Look at what all the people who have experienced Lyme have survived; they are so much stronger than a cold. But it’s all about getting your body to be a strong force, and the way I see it, a lot of that’s about releasing the emotional stress. I’ve been through so much, including the death of my father. I also work too hard, get stressed sometimes, and have real-life things come up. I’ve never relapsed since I’ve been doing this work.

 

LGB: In your book, How to Heal Yourself When No One Else Can, you talk about seeing a silver lining in disease. What do you believe is the silver lining with something like Lyme? And how is that different from the “upside” to illness that you also discuss in your book?

Amy: A silver lining is when we find purpose in our experience. And I think every life experience has purpose. An “upside” is a conscious or subconscious reason to hang onto something we don’t want (like illness allowing us to say “no” to things we otherwise wouldn’t). We don’t want an upside, but a silver lining helps us find purpose in order to complete the experience and come out of it. Once we find meaning, our souls can make sense of an experience and help us move forward.

 

LGB: What is your life like now that you’ve completely healed? Do you have all your energy back?

Amy: I do! I have my energy back. I live a really fun life. I found my wife through my journey, and I get to help others. I’d say sometimes my life is very normal and boring for me, which is exactly what I always wanted. I never wanted to heal and go on to do huge things. I just wanted enough energy to get through my day. I try now, still, to remember that the simplest things are the sweetest.

 

LGB: What are you working on now and how can people find you?

Amy: I’m working on my next two books. My memoir comes out with Simon & Schuster in April 2018. It’s called This Is How I Save My Life: From California to India, A True Story of Finding Everything When You Are Willing to Try Anything. I have another book coming out in 2019 on healing anxiety. In between all that, I’m having the best time working with people in my online healing program. They are the most adamant, sweet, and open-minded people. I couldn’t be happier to be helping them heal. I’m at www.amybscher.com and www.howtohealyourselfcourse.com.

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The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority.

Scott F.

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LGB: Do you consider yourself in remission from Lyme disease and co-infections? How do you define “remission”?

Scott: I have not had any issues that I attribute to Lyme and co-infections for at least five years now. That said, this doesn’t mean that every single Lyme-related microbe is entirely gone from my body, as that may not be the case. I define remission as my prior condition no longer preventing me from doing anything I want to do in life and not experiencing any notable symptoms. I still get some neck and shoulder inflammation, but I’m grateful, as this is minor compared to all I went through. It is important for me to be aware of mold exposures and not be in an environment that has an issue if I want to maintain the level of health that I enjoy today. I continue to be good to myself, but shouldn’t we do that anyway?

 

LGB: How old were you when you were exposed to Lyme disease? How did you contract it?

Scott: I was bitten by a tick in Sea Ranch, California, in 1996 at the age of 26. I was staying with colleagues for a work project and got bitten in their guest room—likely as a result of a dog that brought a tick into the home. 

 

LGB: Did you get sick right away? When did your symptoms start?

Scott: I did not get sick for several months after the tick bite. I had no EM rash and no initial symptoms. When it came on months later over the course of a weekend, it was like an intense flu—it felt like aliens had invaded my body. I had never been that sick.

 

LGB: You had quite a list of symptoms, would you mind listing them for us? Which would you consider your worst symptoms?

Scott: My absolute worst symptom was skin burning and neurological pain throughout my body that lasted for several years. It felt like I had a sunburn every day.

I had a fever that lasted for over a year, and with each doctor I reached out to, I was told it was all in my head.

I could not easily get up and walk across the room. I had balance issues, problems with my vision, joint and muscle pain, digestive issues, cognitive challenges, numbness and tingling, twitching, tremors, tapping sensations, vibrations in my body, crawling sensations in my skin, difficulty taking a deep breath, light sensitivity, night sweats, and more. 

I had anxiety, depression, obsessive thoughts...lots of fear that I wouldn't get through it.

The list of symptoms from Lyme and mold illness are quite lengthy, and ultimately both played a role in my health challenges.

 

LGB: How many doctors did you see—and over how long a period of time—before getting diagnosed with Lyme?

Scott: I wish I had kept better track of this over the years. I reached out to a number of different types of practitioners. Before I got diagnosed, I had seen about 45 doctors. Through the last 20 years, I’ve seen over 250 medical practitioners, maybe more. 

 

LGB: Who ended up suspecting that Lyme was what you had?

Scott: That’s an interesting story. After about 45 doctors and limited progress, I did a Google search in 2005, found a new MD, and went to try again. The MD sent me to a practitioner who did energetic testing with a computer and told me to get tested for foods and then avoid all the foods that were stressful, as that had to be my problem.

The EAV practitioner said to have the doctor test for Borrelia, Bartonella, Babesia, and Ehrlichia based on the results of the energetic testing device. Later blood testing was positive, and the MD diagnosed me with Lyme and referred me to an LLMD [Lyme-literate medical doctor].

 

LGB: What treatment did you initially do and did it help? Did you have any setbacks?

Scott: Shortly after I first got sick in 1997, I worked with Jesse Stoff, MD, who at the time was looking into EBV [Epstein-Barr virus] and parasites. He treated me for a few years with an integrative approach mostly focused on EBV, parasites, and supportive treatment, and I got back to 80 to 90 percent for a few years. I knew I wasn’t perfect, but I thought it was just the residual effects of having had such a difficult illness. I didn’t identify as being sick from about 2001 to 2004. Then in 2004, after a stressful period, all my initial symptoms returned, and I was back to square one. I didn’t ultimately get the Lyme diagnosis until 2005.

Interestingly, BetterHealthGuy.com was launched a few months before my Lyme diagnosis and obviously has a different focus now than when I first created it.

Back then, in 2005 when I got diagnosed with Lyme, antibiotics were about the only option. We have so many more tools now in 2017 than we did in 2005. I was told I would be on antibiotics daily for two to five years, possibly longer. I was on them for a little over three years before I realized that I wasn’t making incremental progress. They were helpful in the first nine to 12 months, and then I didn’t see much more benefit. I’m open to antibiotics and some do benefit, but if I were starting over, I may have opted for a very different path with a focus on natural therapies.

 

LGB: When did you start IV antibiotics? Were you working at the time?

Scott: I did IV antibiotics for about nine months in 2007 and 2008. I had a flexible boss, drilled a hook into my living room ceiling, and sat for a few hours a day with IV bags. I was very fortunate to have been high-enough functioning prior to my illness to still be viewed as having value in the workplace. I don’t know what I would have done without the financial resources to explore various treatment options—especially since we didn’t know what I was treating for eight years. That said, I think that there are less costly options available today that are still very good.  

 

LGB: When did you depart from antibiotic treatment? What are your feelings on antibiotics?

Scott: I stopped antibiotics in late 2008. I had decided to go to Germany to do photon therapy, and it was a requirement of the doctor there to be off all antibiotics. So, I told my doctor that I had six weeks to be done with them, and we made it happen.

I’ve seen some people have major progress with antibiotics, so I am open to them, but I also see people on IV antibiotics for long periods who haven’t explored testing their homes for mold. I don’t believe that antibiotics alone will get anyone with chronic Lyme well. I think an integrative approach is ideal, and for me, at this point, it would be an integrative approach with a strong leaning towards natural medicine. 

Scott’s Note: It is my strong opinion that anyone dealing with Lyme should have their environment tested for mold. If you are getting exposed to mold at home, work, or school and have a genetic susceptibility to mold, you likely won’t make progress until that is addressed. Exploring and addressing mold early in the process makes everything else go so much more smoothly in my experience.

 

LGB: Were you fearful of going off antibiotics and traveling to Germany to try something alternative? Did it help?

Scott: At the time, I was excited about the possibility of trying something new, and I knew that I could go back to antibiotics if I really needed to. It’s been almost 10 years ago, but I think I took some antibiotics with me on the trip just in case. 

Fortunately, though the photon therapy was not a major part of my overall progress, it did get me off the antibiotics, and I continued doing the photon sessions for about a year longer. 

I was at that point already working with Dr. Dietrich Klinghardt, who became my primary mentor and was a big influence in my shift from the antibiotic options to more natural approaches. 

 

LGB: When did you start addressing mold toxicity as one of your issues? How big of a role did mold play in your illness?

Scott: Mold toxicity was a huge factor, maybe even bigger than Lyme ever was. A year or so after my Lyme diagnosis in 2005, I came across Dr. Ritchie Shoemaker’s book Mold Warriors. I then started having discussions with my doctors about mold. I had some antibodies to mold in my blood testing, which suggested an allergic response to mold but also an exposure. While this is entirely different than the Biotoxin Pathway that Dr. Shoemaker discusses, it was a clue that mold may be a factor. I then did the ERMI [Environmental Relative Moldiness Index] test in 2008 and had a score of about eight.

I had several water intrusions in the apartment I was living in at the time, and I even had visible mold in a closet that had flooded years earlier. Many of my books had mold on them, and the day I moved and threw out the bookcase, the bottom of it was covered in mold. So, I knew there was mold, but I didn’t understand that mold could lead to health problems at that point in my journey. Dr. Shoemaker has really made a difference in the world by bringing attention to this important topic.    

 

LGB: You tried a lot of different treatments that are considered experimental over your 20-year journey. Would you mind listing some? Did any one make a big difference?

Scott: Some of the things I found most helpful included: various detoxification options (such as coffee enemas, drainage remedies, and binders), herbal antimicrobials (for Lyme, co-infections, parasites, viruses, and fungal issues), RX antiparasitics, ozone, essential oils, tonsil cryotherapy, sauna, minimizing EMFs [electromagnetic fields], KPU [Kryptopyrroluria] treatment, melatonin, emotional work.

No one thing was magic. The real key for me was that everything I did was guided by energetic testing of one type or another. That made a big difference.

 

LGB: Who was the person who was most influential to your recovery and in what way?

Scott: The person who had the most influence on my journey was Dr. Dietrich Klinghardt, MD, PhD. His influence was both through introducing me to a system of energetic testing called Autonomic Response Testing and to frameworks such as the 7 Factors, 5 Levels of Healing, and the Klinghardt Axiom. Understanding that my focus had to be broader than just killing Lyme and other microbes was key to moving things forward. At the end of the day, the microbes aren’t generally the primary issue. 

 

LGB: You mentioned that there were things that set the stage for your illness manifesting. What were they?

Scott: I had always been a type A personality, a perfectionist, doer-type. I think some of this came from needing to prove my worth and value in some way. I think that years of pushing yourself impacts both your adrenals and your immune system and can set the stage for later health challenges.

As I worked through my own mental/emotional baggage, I found that I didn’t feel worthy of or deserving of wellness, and that had to be a focus for me to make progress toward health.

 

LGB: What were some modalities you used to address these emotional and energetic issues?

Scott: I’ve done many things here, including Family Constellation, Dr. Klinghardt’s PK [PsychoKinesiology] and APN [Applied PsychoNeurobiology] work, EFT [Emotional Freedom Technique], EVOX [Perception Reframing Biofeedback Therapy], DNA Theta Healing, NET [Neuro Emotional Technique], and more. I also worked with Amy B. Scher using her own system, which incorporates Body Code, Emotion Code, Donna Eden’s work, and other systems. I mention some potential resources in this realm on my site: http://www.betterhealthguy.com/clearing.

I think EMDR [Eye Movement Desensitization and Reprocessing] can be a very powerful tool in this realm if one can find a good practitioner.

 

LGB: How long have you considered yourself well?

Scott: I’ve been pretty well now for about the last five or more years, with one major setback after a mold exposure that had to be addressed. As mentioned, I continue to work on improving and maintaining my health. I don’t think one generally gets to a point after so many years of illness where you wake up and say, “It’s done.” Part of the journey is to learn to be better to yourself, to incorporate better nutrition, to manage stress levels, and I think all of this is still important even after we feel better. I don’t think we can go back to doing the things we did before our illness and expect to maintain our progress. I also continue to support detoxification daily.

This combination of things works well for me. I feel good, but I still prioritize the focus on my health very highly. 

 

LGB: Is your energy fully back? Do you experience any lingering symptoms?

Scott: My energy is often a bit too high, my friends tell me. I definitely have my full energy back.

Lingering symptoms include the neck and shoulder inflammation, though I spend a lot of time each day on a computer, which isn’t helping. My vision isn’t perfect, but I had six eye surgeries before Lyme disease. 

 

LGB: What do you do to maintain your current state of health? 

Scott: I still take a number of supplements to support my body, primarily around detoxification support. I do things to support detoxification, such as an ionic foot bath and FIR [far infrared] sauna. I use a PEMF [pulsed electromagnetic field] mat. If I have a day where I don’t feel my normal self, I might still do a coffee enema. I don’t eat gluten, and I minimize sugar. I eat highly nutrient-dense foods and incorporate “Power Shakes” into my day with pea and rice protein, healthy fats, chia or black sesame seeds, collagen, minerals, and more.

 

LGB: What are you doing now? How did your Lyme experience change what you’re doing with your life?

Scott: I was in the corporate world as a software development director until the end of 2016, when I left by choice. It wasn’t that I couldn’t do the work, but after coming through Lyme and mold illness, my perspective had changed, and I didn’t want to do it anymore. I am grateful for what it allowed me to do to get well, but I wanted to do something more.

My focus now is on health consulting; doing my website at BetterHealthGuy.com; working on a weekly podcast called BetterHealthGuy Blogcasts (available on my website, iTunes, YouTube, Google Play, and Stitcher); serving on the board of the LymeLight Foundation, which provides treatment grants to young people dealing with Lyme; and various other projects. I’m busier than ever but also having more fun than ever, and the work is more purposeful, which fuels me. 

 

LGB: Is there anything you’d like to add that I haven’t asked you?

Scott: Lyme disease is a difficult journey, but there are many good things that come from it as well in my experience and that of many people I have spoken with over the years. I often like to end with:

Lyme disease is a messenger for many, and the process of going through it is life changing. While it is the biggest challenge many will ever face, something beautiful often happens as a result of the experience.

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The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority.

Allie C.

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LGB: First off, do you consider yourself in remission?

Allie: I do. Though I still deal with symptoms that are related to issues stemming from Lyme/Lyme treatment, I think I have the tick-borne disease under control. Remission is a word that suggests that it will probably come back at some point. My life so far has been a series of healthy times and sick times. I have no reason to believe that won’t continue, but I do have a feeling that if/when I get sick again, it won’t be as bad as it once was.

 

LGB: When and where did you contract Lyme disease? Did you know right away that you were infected?

Allie: I was first diagnosed with Lyme disease when I was seven years old, in 1998. I had the most classic presentation of the disease. I had a tick bite. I had a fever. I had a bull’s-eye rash. I had a positive blood test. I was a textbook Lyme case.

 

LGB: Did you take antibiotics?

Allie: I did. I was diagnosed right away and was prescribed a short round of antibiotics. I can’t remember exactly how long it was, but I know it was much less aggressive than it should have been. Most doctors now recommend three to six weeks. I was on antibiotics for less than two weeks.

 

LGB: How old were you when your Lyme came back? What doctors did you consult? What treatments did you use?

Allie: My symptoms started to reemerge just as I began puberty (around 12 or 13). By the time I was 14, they were impossible to ignore. I was in constant pain and was even struggling to walk at one point. A local doctor in my town actually approached my parents to ask if I had ever been diagnosed with Lyme. She was the person who first re-diagnosed me. I was on and off oral antibiotics without seeing much improvement at all. Eventually, she put me on a daily IV. I’d go to her office before school every day for my treatment. It was both physically and emotionally exhausting. Just before my sophomore year of high school, we decided to leave her to go and see Dr. Raxlen, who was practicing in Connecticut at the time. My dad also had Lyme and saw much more improvement with him than I was seeing with the local doctor in town. Raxlen started me on a PICC line, and I finished up my longest and most aggressive round of antibiotic treatment with him that year.

Junior year of high school was my healthiest year since elementary school. I was off antibiotics and started working with a naturopathic doctor in Connecticut to build my body back up after all that treatment. He started addressing the candida issues and the massive nutrient deficiencies I had in my body. I was still in and out of his office for treatment all the time, but I felt healthier than I had ever been. 

 

LGB: What was it like to be sick as a teenage girl? Did you tell your friends about your illness?

Allie: I was always a pretty shy kid, but it’s hard for me to know whether or not I was shy just because I was shy or if I was shy because of my experience with illness. I missed weeks of school every year, and even on days I was there, I was regularly missing class for doctors’ appointments or treatments. Even still I was really private about everything I was going through. I rarely told classmates about my Lyme. Only my closest friends knew what was going on day to day, and even they didn’t know the extent of my challenge with the disease.

I think I was afraid people would be grossed out by me or would think I was weak. I worried about how my swollen knees and ankles made my legs look fat. I worried about how pale I was or the dark circles under my eyes. At the time, I always played things off like I didn’t really care. I pretended like I was above all the high school drama and image-focused thinking. It’s only really in hindsight that I’ve been able to understand that confidence was a façade.

I felt best when I was in a play or in acting class. I wasn’t bad at it, which was fun, but I also got to play in someone else’s body, which I think I loved more than I knew at the time.

 

LGB: What led up to you being diagnosed with neurological Lyme and co-infections? What were your life and family circumstances at the time?

Allie: The summer before my senior year of high school, my father landed a job in Boston, and my family needed to relocate. I was finally feeling healthy and finally starting to get into the swing of things at school. My parents and I decided it would be best for me to stay in New York and finish school there. I’d live with a family friend in our house until it sold and would commute back and forth to see them whenever I could.

I was (and am) incredibly close to my family. And my boyfriend also left for college that summer. It was a pretty stressful time, and I didn’t really know the impact stress could have on my body.

That summer all my symptoms slowly started to come back. I was working at a camp, so I blamed them on the sun, on being out of shape, on not getting enough sleep, etc. Within just a couple weeks of starting school, I had my first major neurological flare. I was struggling to read, to write, even to speak. I was getting lost in the hallways of the same school I’d been in every day for four years. I was in six car accidents in just six weeks. 

It became very clear that something was wrong. But, at first, it didn’t look like Lyme disease to me.

 

LGB: How did you view your doctors and what they were telling you at the time? Did you believe you were sick?

Allie: My parents got an appointment with one of the best pediatricians in Boston. In my mind, these people were the experts, and I didn’t know very much. They told me that it was physically impossible that my symptoms were related to Lyme or TBD [tick-borne disease]. And instead told me I was regressing to a stage of infancy in response to my parents’ move. Effectively, I was having a mental breakdown.

This did not resonate with me at all. I was certain that there was something physical going on, even if I didn’t know what that was. That certainty made me ignore a lot of my emotional experience and ultimately created this rift in my mind between physical and mental health.

Doctors told me it was either all in my head or all physical. I had a really hard time understanding how my mental health and my physical health influenced each other.

Still, all that thinking came much later. I was terrified and distraught by this doctor’s immediate dismissal of my symptoms as “all in my head” and started doubting my own perception of what was happening in my body.

Ultimately, I found out I was still dealing with Lyme and also with Babesia, Bartonella, and Ehrlichia. Once I got back to aggressively treating the TBD, I was able to start to see a light at the end of the tunnel again.

 

LGB: Were you still sick and undergoing treatment when you went off to college? How did you handle being sick as an undergrad? Were you able to graduate?

Allie: I’ve actually always felt relatively healthy since my senior year of high school, even when things aren’t as good as they should be. When I went off to college, I wasn’t nearly as sick as I was earlier that year, but I was certainly still symptomatic and was still on antibiotics. A few months into my freshman year, I went off antibiotics for a while and then back on that spring.

I did graduate on time from both high school and college with a ton of support from both of my schools and also by slowly learning how to take better care of myself and how to manage the waves of sickness and wellness that seem to shape my years.

 

LGB: What was your relationship to your body at this point?

Allie: I’m always working on my relationship with my body. My mind and my body feel so separate from each other, and I think the reason is that I spent so much of my time trying to ignore or hide how my body was feeling. College was no exception. I’m still working on trying to take care of both my body and mind and not just one or the other.

 

LGB: When did things start turning around for you? What do you think was responsible for the shift?

Allie: As I’ve said, I was (and maybe still am) in a pretty constant cycle of health and illness. I go through phases where things are fabulous and then phases where things are not. I am noticing, though, that the sick periods are getting farther and farther apart and are getting shorter and shorter.

There was a turning point for me when I started to change my lifestyle to accommodate my disease and also accepted the fact that this was something I needed to learn to deal with. It wasn’t something I could just wish away. I know it sounds weird and cheesy, but I think the biggest shift for me was when I really accepted my anger, accepted my disease, and accepted that it was my job to take care of my own body.

This all started happening as I was working on my book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial. I had the privilege of talking to many other people about their experiences with Lyme, and I think doing that helped me to accept my own.

I’m living a very normal life these days. I’ve been able to let go of so much of my grief and anger. In some way, I think that was holding me back from living the life I wanted to be able to live when I got healthy.

 

LGB: What are the top three things you did that you attribute to getting your life back?

Allie:

  1.  Antibiotics and Western Medicine: I am a firm believer that if you have an infection, you need to treat it as aggressively as possible. I attribute a lot of my success to the work I did with Dr. Raxlen on treating the infections and keeping them at bay.
  2.  Supplements and Dietary Support: That being said, I also think that you need to make sure your body is strong enough to handle that treatment. For a long time, I didn’t take any supplements, much to my parents’ and doctors’ chagrin. Once I started down a more holistic path, I was able to do much better
  3.  Acceptance: I couldn’t get better until I learned to accept what this disease did to my sense of self, to my body, and to my relationships. Once I could accept that, it was much easier to let go of some of the grief and focus on moving forward.

 

LGB: When did you stop taking antibiotics? Have you had any Lyme symptoms since then?

Allie: I was last on antibiotics in the spring of 2014. I had another neuro-flare in January of 2016 but was able to get my symptoms under control with strict diet changes, with the PK Protocol, and with tons of vitamin support.

 

LGB: Do you still maintain the lifestyle and dietary changes you made?

Allie: I should, but I’m not the best at it. Intellectually, I know and understand the importance of maintaining that lifestyle. But I’m still learning and doing my best to take better care of myself every day.

 

LGB: Are you afraid of a relapse?

Allie: I do not look forward to when I have to deal with symptoms again. I’m always afraid when I first feel them. But I don’t think I’m afraid in the bigger picture. I am armed with so many resources, so much information, and so much support. I truly believe that if I do get sick again, I will know what I need to do to get healthy.

When we go through this awful disease, we don’t come out with nothing. We come out knowing ourselves much better than we did going in. I think that is an incredible weapon we can use against illness. And so, no, I’m not nearly as scared as I once was.

 

LGB: Do you have your full energy back?

Allie: On my good days, I am operating at pretty much 100 percent. That being said, I do need to be very careful about running out of gas. I’m doing a million things at once right now. I tend to accelerate as fast as I can, and then I end up hitting a wall. My crashes are still pretty bad, but they’re also getting better.

 

LGB: Do you still think about Lyme and/or illness? What is your relationship to illness in general?

Allie: I still think about Lyme and illness every single day. But I think that’s because my work is so directly tied to it. If I wasn’t working in this space, I don’t think it would take up as much of my brain space as it does now.

 

LGB: What are you doing now that you have your life back? 

Allie: I run Suffering the Silence, an organization dedicated to leveraging the power of art, media, and storytelling to raise awareness around life with chronic illnesses. We encourage people to speak up about their experiences in an effort to ultimately break down the stigma that so many of us feel every day. I get to travel all the time with STS, and I am also still writing quite a bit. In October, I also got married to my boyfriend of ten years (we met in high school!) and it was amazing to reflect on everything we have been through with Lyme, and how far we have come.

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The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority.