Opening Up About Chronic Illness: My Late Stage Lyme Journey

The subject of chronic illness is a major departure from the content that I’ve shared on this site for the last 9 years. But as I’ve grown more deeply connected to my readers and forged meaningful relationships with others in the beauty and wellness world, my work has become more personal, and less private.

 What invisible illness looks like.

What invisible illness looks like.

Still, I’ve waited nearly three years to share what my daily life really looks like— partly because I’m at heart still a super private person and partly because I spent more than 2 of the last 3 years seriously ill and utterly dysfunctional, without a diagnosis to explain my symptoms, and unable to find a path to healing. I share this story with you today, hoping that it will help someone else to get well or to keep pushing through a dark time, and also with the hope that it will allow me to be more open about my journey as I continue to heal.

I know now that I’ve likely had Lyme disease present in my body for years, but it became active essentially overnight in 2015, following a stressful period. At the time I had a 1 year-old child, had just finished writing my second book in one year (Eat Pretty Every Day, a book that’s very dear to me!), had just stopped breastfeeding (this is important because big hormonal shifts can open up the door for infectious diseases like Lyme to take hold), my son was experiencing a stressful, unexplained health issue, and I was emotionally and physically exhausted from it all. I went on a work trip across the country and woke up feeling 100% like I would die, alone, in my AirBNB. I remember looking down at my abdomen and watching it pulsate, along with my heart that was rapidly pounding out of my chest, while dealing with terrifying physical weakness, inability to breathe, and gut-wrenching nausea. I steeled all of my physical and emotional strength to make it through that awful day and get myself on a plane home, to rest and get well. Yet for more than 2 years after that nightmarish morning, I continued to wake up the same way every single day— abdomen throbbing, heart racing, unable to take a full breath, painfully nauseous, weak, and in the throes of a panic attack— just from the act of waking up. It felt like something out of a movie, so I called it the Groundhog Day from hell.

Months and months and then several years passed while I pursued treatment and answers, holding out hope that someday I’d recognize my body again. I kept looking back, retracing my steps, and asking, where did my healthy body go? What went wrong? At first, it was my nature to keep up a positive mindset. I’d figure it out and be better soon. Just had to be patient. Life moved on, but my nightmare persisted. Optimism started to feel like a desperate tug-of-war match in my mind, instead of the default setting it had been before. Then, after 2+ years of related diagnoses that didn’t quite hit the mark— including mold toxicity, heavy metal toxicity, prediabetes, adrenal fatigue, candida, parasites, dysautonomia, gut dysbiosis, MTHFR, and Epstein Barr, plus pursuing endless treatments for those issues that made little to no improvement on my symptoms—I received a THE diagnosis, the one that explained it all: late stage neurological Lyme disease and coinfections.

What Lyme Looks Like

I thought I was familiar with the symptoms of Lyme disease, but still marvel at how much I didn’t know. Fatigue and joint pain, classic hallmarks of Lyme, weren’t my biggest struggles. In my body, Lyme manifested in serious cardiac and central nervous system dysfunction that for much of the last 3 years has left me essentially homebound. At various periods of time, walking one block down the street, going to the post office to mail a package, or picking up a few groceries have not been possible for me. Let alone the responsibilities that come with career, motherhood, and life at large. I’d work up the strength to go to Target or the grocery store as my single daily goal, and once inside I’d find myself completely disoriented and my nervous system reeling — the overhead lights feeling so bright I’d have to squint, sounds too loud, pulse racing, struggling to take a full breath, too weak to push a cart or bend over to pick up items on lower shelves. Even writing about that feeling makes my eyes fill with tears, because I have endured dozens and dozens and dozens of such moments, even in my own home, lying in my own bed, in all the spaces I used to feel safest. I’ve been woken in the middle of the night by panic attacks and sudden bouts of tachycardia that made me question whether I’d survive to see another morning. I’ve watched my body go from healthy and strong to weaker than I could ever imagine. That is my Lyme.

For the last three years I have tried my best to get comfortable with the fear and isolation that comes with unexplained chronic illness and inhabiting a body I didn't recognize. One of the most helpful things I’ve heard during my chronic illness journey was that ‘getting comfortable with the uncomfortable’ was one secret to thriving. I made that my goal. However, as much as I’ve tried, getting comfortable with cardiac and nervous system issues is something I still struggle with daily. The stress of being seriously ill for years without an explanation is also something that I can’t put into words. If you’ve been there, you know. Certainly it tested my marriage, my relationships, and my mental health. It reduced my work output to baseline survival mode, and led me to decline incredible career opportunities and bow out of professional roles that I loved. Always, I’ve believed I’d find a way out, and trusted implicitly that my body wants to thrive and heal. But this has been the fight of my life.

Because Lyme is an invisible disease, there are few people in my life who are aware of my experience, and an even smaller number of those who have even a partial understanding of how sick I’ve been. My husband is the one person who has been the closest to this experience, and he’s had the difficult job of being present through the hardest days, yet feeling powerless to help. I’ve said before that if some kind of late stage Lyme simulator were invented, and my friends and family could experience it for even 2 or 3 minutes, they’d be completely horrified at what it feels like to live in this body 24/7. Yet it’s completely unseen. And Lyme is by no means the only invisible illness out there. This experience has at many points felt like the plot of a horror film— you wake up inhabiting a body that is so dysfunctional that you don’t know if it will possibly survive the day, yet you look perfectly normal to everyone around you.

1,000 Days

Not too long ago, I realized that the end of August marked 1,000 days that I’ve fought through active Lyme disease. Every single day I count as a massive victory. So very many mornings I opened my eyes and felt crushed by the weight of the hours I knew I would have ahead of me, just getting through normal tasks. So I’d get up, take things minute by minute, and play the role of the person I used to be, as best as I could. I’ve kept social media far from my chronic illness experience, because, well, these years have been unimaginably hard. In my work I’ve always sought to inspire the best in others, and sharing the most brutally difficult days of my life felt wrong – and too raw. Looking back these years have still had wonderful moments. The bright spots have come from my son, who was only 22 months when Lyme took over my body. Although caring for a small child while having a chronic illness was incredibly tough, on so many days he forced me to keep fighting. In those early months, getting out of bed and taking care of him and myself during the workday while my husband was away was my single goal. Sometimes even that was impossible and for a time we lived with my in-laws so I could be around other functional adults. No work got done— only if I pushed myself, often lying on my stomach on the floor while answering emails or taking calls to lessen constant nausea. If I had 20 minutes of down time, I’d need to spend it resting my body, or I’d use it to research my symptoms with the hope of figuring out what was happening to me. Other bright spots have been truly slowing down for the first time in years, and my reconnection to spirituality, something that didn’t get much attention when I was well and busy being a mom and health coach and author. Faith that this dark experience will clear the way for something even more beautiful in my life has given me the strength to get through daily moments of trauma. Prayer has helped me feel seen and heard in a way that invisible illness does not allow. Publishing Eat Pretty, Live Well and Eat Pretty Every Day while I have been sick has been a challenge— and has kept me from traveling, speaking, and connecting as I would have liked to— but getting daily messages from you all about how much the books were inspiring you and bringing beauty and health into your lives brought me joy during unspeakably hard moments. Those messages, photos, and stories kept me creating and doing as much as I have. You will never know how grateful I have been for your messages on days when I felt like I had lost myself completely.

Finally receiving a Lyme diagnosis was validating, but not a relief, as treatment for late stage Lyme is a giant grey area. Everyone has a different opinion on how to approach treatment, and no one seems to have proven answers. I feel as if I’ve explored every angle of Lyme treatment, tried countless alternative therapies, but in the end my cardiac symptoms were serious enough that long term antibiotics were the path I felt compelled to take. Riding to meet my new Lyme doctor this past February, my body was so weak and dysfunctional that I felt like I was taking a last-ditch effort to survive. I was fighting to stay alive for so many reasons, most of all my 4 year-old son who needs a mama and would hurt the most if I weren’t around. It was the rock bottom of all the rock bottoms I’ve had over the last 3 years. And now, 6 months into antibiotic treatment, I am slowly beginning to feel my body return. Each month we increase the antibiotic dose, producing a Herxheimer reaction that makes me sick for 2 ½ -3 weeks, then on week 4 I begin to feel good and then we start the cycle again. On one hand, it pains me to be destroying the microbiome that I know is so integral to health and (ironically) immune function. But in this situation, it was a choice I felt forced to make, and I feel lucky to have had it. Every day I fortify my body with high-dose probiotics and fermented foods in addition to colorful, fresh, whole foods with a constant emphasis on detox and thus have tolerated this strong course of treatment relatively well most of the time. When my Lyme is in remission, I know I’ll be able to use all that I know about rebuilding the microbiome to nourish my body back to strength, step by step.

I’ve learned that when it comes to Lyme disease my experience is not uncommon. One big irony is that because I took such good care of my health, I remained functional with this disease for many years before it became truly disabling. (I can trace my first Lyme symptoms back to 2009, when I developed an ‘idiopathic’ (unexplained) cardiac arrhythmia seemingly overnight). And if I hadn’t had such a clean diet from day one of my active illness, I honestly don’t know if I’d be here today. Nourishing my body well has helped me survive, physically and emotionally when there was little else I could find to help myself. But in my experience nutrition alone doesn't cure late stage Lyme. Neither do positive thoughts or truckloads of expensive supplements. For the first year of my active Lyme experience, I was on a grain-free, dairy-free, sugar-free diet. I ate clean protein and vegetables ONLY. Yet none of my symptoms improved. Honestly I would’ve eaten ANYTHING and followed any diet to feel even slightly better, but even that strictly clean diet along with nearly two years of functional medicine treatment was not enough to kickstart healing from a disease that had taken up residence in my body for almost a decade.

The Future

But things are finally changing. In just the past few weeks I’ve been able to take walks around my neighborhood and in nature with my family. I’ve been able to take my son to the park and feel well. I helped do some long-overdue pruning work around our yard. I’ve spent the day with friends and talked openly about where I am in the healing process. And I wanted to share openly here too. I had to wait until it was the right time for me. But I am ready to begin to release this experience so I can move on and support my emotional body even as my physical body recovers. Experiencing my body coming back to life is enough to reduce me to tears every time I stop to process it.

There are so many aspects of this journey that I could write more deeply about. This post just scratches the surface. I never know whether to share what’s so personal. But, in keeping with my goal to inspire you and help you feel your best, going forward I’ll be sharing just a little bit of what I do day to day to continue to heal and thrive. That will keep things authentic for me, so I don't feel like I’m hiding a giant monster in a closet from all of you. And in my heart I know that sharing openly will be healing for me too. So many of you have asked me when I’ll have another book to announce. And after several almost-books, I sadly still don't have one officially on the way. But I believe that the book I’ve been trying to share with the world— inspired by the intersection of beauty and healing— is going to be a big part of my healing journey. I’ve found that the questions around how to optimize healing look a lot like how to optimize beauty. And happiness. And to me it’s profound. I already have chapters written and can’t wait for the opportunity to bring it into the world, because this experience has given me so much new perspective.

I am certain that many of you reading this post will be going through dark days of your own. I’ve learned is that you never know what someone else is going through behind closed doors. Whether or not you choose to share, today or in the future, I send you my love, strength, and most sincere hope for healing, in whatever form you may need. Be kind to yourself, and try to look for the light coming through. So often we feel the need to reflexively say ‘fine’ when someone asks how we are. But expressing what you're really feeling to those you trust can be a powerful part of the healing process. I understood this even before chronic illness, but I feel it even more now: this is life, it’s full of unimaginable beauty and unimaginable pain, and every day that you have is a gift.

Be well.

In beauty and health, Jolene

 

Things to know about Lyme:

Every experience is different, and you might find one person who is completely symptom-free after a short round of antibiotics, and someone else who’s been fighting the disease for decades and is still seriously unwell. It’s just not possible to compare any two Lyme experiences.

Along with Lyme disease (borrelia burgdorferi) comes a spectrum of other infections (called coinfections) that take up residence in the body. I’ve been told that I have babesia, ehrlichia, and rickettsia coinfections in addition to Lyme, but my current practitioner feels that it’s the coinfection bartonella that has taken the biggest toll on my body and my central nervous system. My current antibiotic regimen is tailored toward the bartonella coinfection.

Testing is notoriously unreliable, so Lyme is truly a clinical diagnosis (based on symptoms). My Lyme blood tests are still negative (Elisa) or CDC-negative (Western blot). My Igenix Lyme test is only a weak positive. During my sickest days, my cardiologist and general practitioner gave me a clean bill of health— what?! Yet I have textbook symptoms that can be clearly recognized by a doctor who specializes in Lyme.

If there’s mystery illness present, explore Lyme just to rule it out. Lyme manifests differently in everyone, based on the individual body and the coinfections involved. I never saw a tick bite or a bullseye rash (most don’t). But in many ways, I am a classic Lyme and bartonella case. The cardiac and neurological symptoms I experience (panic attacks, heart rhythm issues, air hunger, nervous system disturbances, memory and cognition issues, etc.) are exactly what Lyme looks like in many bodies. Yet in the 9 years since I was diagnosed with a cardiac arrhythmia out of the blue, Lyme did not enter the conversation— not even when I became chronically ill. I live on the East Coast of the US, where Lyme is prevalent, but you don’t need to live here or have spent time here to become infected.

If you know someone with chronic Lyme disease (or chronic illness in general), rather than asking them how they are feeling— ask them how they feel today. Right now. Is it a good day, or a bad day? I’ve learned that with chronic illness you take life one day at a time.

Basics that have helped me through chronic illness:

·      Naps. At least one 15-min nap a day if I can manage it, to get through the day.

·      Being kind to myself. Promising myself over and over that I’d crawl out of the abyss of this experience one step at a time, one day at a time.

·      Visualizing healing. Actually picturing it and feeling it in my body. I truly believe that your thoughts become your reality, so thinking positively has been key.

·      Great nutrition. Fresh, colorful, whole food is the foundation of health and I was never willing to give up food that made me feel good, even when it was so difficult to sum up the energy to cook.

·      Acupuncture. I found that regular treatments helped reduce shortness of breath that I’d been struggling with daily for years.

·      My home and its green space. We moved from the city to the suburbs during my first year of active Lyme, and my home, garden, green grass and closeness to nature have brought me so much healing energy.

·      Basic comforts. A cozy robe, a homecooked meal, snuggling with my son or laughing with my husband.

·      Pur gum in Spearmint. Chewing this aspartame-free gum has helped my nausea and the mint enables me to breathe better when my shortness of breath is the worst. I’ve had it on autoship from Amazon for the past several years.

·      Natural Calm Magnesium Plus Calcium powder. Supplementing magnesium allowed me to breathe easier and helped to calm my body to some degree.

·      Faith. And reconnecting to a higher power and purpose for my life.

·      Good days. They‘re the promise of what could be, and a link back to the life you remember.

·      Hot Epsom salt baths. This is my place to relax my nervous system, forget worries at the end of the day, and prepare for sleep, which can be really hard with Lyme.

·      Sleep. The escape from reality that also helps me strengthen my body.

·      Green smoothies. I make these daily and load them up with medicinal foods— big handfuls of detoxifying cilantro and parsley, organic barley grass, adaptogens (see below), marine collagen, plant protein, avocado, loads of greens, wild blueberries are staples.

·      Adaptogens. Especially chaga mushroom for my immune system, Lion’s Mane mushroom for brain health, ashwaganda, schisandra, fresh turmeric.

·      Simplifying everything, from dinner to dressing, without shame.

·      Liposomal vitamin C. This has been wonderful for my immune system, especially during winters, but I take it year-round.

·      Liposomal glutathione. Incredibly helpful for detox and Herxheimer reactions.

·      Mega-doses of probiotics. In addition to homemade fermented foods like sauerkraut and probiotic chia pudding, I have relied on probiotics by Prescript Assist, Hyperbiotics, Biohm, Jarrow, and Inner ECO.

·      Little pleasures. Like caring for my skin with a beautiful natural cleanser, mist and serum at night after a long day. It’s always amazing to me that beauty products have the ability to make you feel like a queen for a moment, even if things may be falling apart around you. And there are so many wonderful people creating beautiful, healthy, healing products today.

·      Sharing stories. Connecting with a few women I know who have Lyme has been one of the most cathartic things I could imagine. And at the same time, talking about my experience with a few wonderful people who know me well. I’m so grateful to them for listening.

·      Crying as hard as I can when needed. At times crying has been such a massive emotional release for me when, not being able to be physically active, I had few other ways to release stress. I highly recommend it; you’ll feel like a new person afterward.

·      Love. Isn’t that what gets us through all of our struggles? Remembering that nothing else matters, that everything else can crumble, but love will keep you going somehow.


Have you experienced illness that's chronic, or unseen? I'd love to hear your own story, here or via email at jolene@beautyiswellness.com.