My Journey to a Chronic Lyme Disease Diagnosis
Hi my loves. 🙂 Happy Tuesday. It’s time for a mega health update, especially if you’ve seen my Instagram over the last week or so. I have been sharing openly there about all that I have been going through (hint: LYME) and it has been amazing to receive the outpouring of love and support from friends, family, and so many of you.
If you’ve been here for a while then you know that this year for my health has been rough. The VERY SHORT version (all of the longer versions are here on the blog just scroll back a bit to read them) is that I woke up on January 1st of this year with the scariest, most debilitating and most painful full-body hives and eczema rash. We’re talking the type of rash that makes your skin feel & look like its melting off from contact with a lava explosion. The itchiness and severity knocked me to my knees, made it impossible to sleep, exercise, or work, and all around made me feel incredibly depressed and hopeless.
Being VERY used to random allergy flareups & unusual health concerns, I kept telling myself it would get better with time, but in reality all it did was get worse. I tried everything from cortisone shots to Ayurvedic herbs to elimination diets to a solo healing trip to Bali and so many things in between. By the end of January it was clear to me that the rashes were not caused by some sudden & new allergy, which scared and confused me even more (because then what could it be?!?!), but I bottled in so much of how fearful I really was of what was going on.
Going from Bad to Worse //
I bottled it in a LOT. How could I not when I had no freakin idea what was wrong with me and the only way to explain my excruciating amounts of pain & brain fog was by this seemingly unrelated full-body skin-on-fire rash? I began to obsess over things that might cause eczema. From food allergies (not really) to histamine intolerance (yep) to mold poisoning (I was right) to Lyme disease (right again) to Mast Cell Activation Syndrome (right yet again) I started to tell myself some or all of these things had to be affecting me.
The truth is, I was the only person who knew how bad it was getting and how rapidly I was deteriorating. I have bounced from doctor to doctor over the years, and I didn’t know who to turn to in this case. Functional medicine doctors whom I have found so much help from over the years just wanted to focus on the gut, and I knew this was beyond a gut health problem. Spiritual healers, shamans, and naturopathic doctors whom I adore for so many reasons just ended up focusing on the energetics and the vibrational nature of what was going on… which was helpful, but again I knew it was beyond a mere boundary issue or an ancestral wound problem if you know what I mean.
Dermatologists failed me time and again. I had one terrible appointment with a dermatologist back in February where he didn’t even get close enough to me to see what my rash looked like. He prescribed me topical and oral steroids and declared that there was only ONE type of eczema (WTF?) and in so many words implied that I was a delusional hypochondriac for thinking otherwise.
Nutritionists again just wanted to focus on the gut and have me tested for parasites and yeast, which always came back positive, but I knew it was not just parasites and yeast on their own causing my entire physical vessel to deteriorate. Beyond the rashes, deeper things were going on that terrified me in their severity. My ability to focus on simple tasks was basically non-existent. The thought of responding to a day’s worth of emails paralyzed me. I had to check the time on my iPhone every few minutes to have any clue what time of day it was, and after I looked I would forget all over again. The stress of a normal brand partnership often sent me into a tailspin of anxiety and frustration and tears.
I had NO motivation to set up a usual day in my life. Waking up itself was next to impossible. No matter how much I slept (which was usually barely at all due to the racing thoughts and insomnia and itching) I would wake up feeling like I hadn’t gotten a wink of sleep. Things like photoshoots, podcast interviews, and hosting events became incredibly daunting to my exhausted self and made me feel physically nauseous to even think about.
I found everything under the sun to blame it on. Insomnia from the rashes, my Saturn Return (astrology talk!), a “mid-20’s” burnout from working so incredibly hard with no breaks for the last 5 years, taking on too much, shifting my passion to something slightly different than blogging and brand partnerships, an inability to cope with stress, a wanderlust deep inside of me that made it hard to sit still & stick to a routine, a need for a change of scenery, bad allergies, a really bad parasite… the list went on.
But deep down, like I said, I knew there was something more serious going on. Time and again I told my mom, “One day we are going to find out something is REALLY wrong with me. Something very serious. Mark my words.” I have been saying that to her for as long as I can remember but this year it all came to a head and there was no more ignoring it.
The Road to the Diagnosis //
As I mentioned above, by late January I was getting freaked out. But I was still telling myself it was an allergy. Thank goodness for my dear friend Celeste Wilson (of The True Spoon) who met an MD who is a Tick-Borne Disease Specialist at an event who was discussing the symptoms of her patients (mostly Lyme patients) and every. single. symptom. hit the nail on the head as to exactly what I was going through. Celeste of course noticed the similarities and sent me a long and sweet text saying, “I don’t want to scare you, but… it sounds like you may have Lyme disease and it would be worth going to see this doctor.”
The doctor was Dr. Erica Lehman (who you can find here if you’re interested), and I saved the number in my phone. At that time I was still too caught up in thinking and believing the rashes I was experiencing would be fixed 100% holistically, or would just go away on their own. I was deep into my Panchakarma and Ayurvedic herbs, a kitchari diet, and more. The rashes seemed to be going away a bit and I couldn’t stand the overwhelming thought of introducing a new doctor or new regime into the mix.
You have to remember too that I was so jaded by the medical world by this time. For my ENTIRE LIFE I had not gotten conclusive answers from doctors. In my life I had been diagnosed with ADD, ADHD, IBS, hormone imbalances, nutrient deficiencies, anxiety, insomnia, a hiatal hernia, eczema, chronic urticaria (hives), on and on. But none of these things or the medications & supplements that I went on for them helped me. And we are talking a lifetime’s worth of doctor’s visits, including colonoscopies, endoscopies, X-rays, state of the art treatments, heavy duty meds, you name it.
I was SO USED to even the most brilliant of functional medicine doctors telling me, “Oh, it’s all in your gut. You have YEAST! And parasites! After tweaking your diet and taking 92348398 supplements for X amount of time you’ll be all better.” But the problem was, the supplements never worked. Nothing ever seemed to kill the parasites. I had been on four rounds of antibiotics for one parasite in the last two years and then a full Ayurvedic herb protocol this year and I had resigned at this point to just live with it. (How crazy that I was just going to “live with it,” now that I know the damage it had been doing to my stomach lining. Not to mention eating ALL of my nutrients and vitamins.)
But by March of this year I was getting desperate. The rashes were still flaring badly and the exhaustion and brain fog were getting worse. I had no energy to get out of bed most of the time. I cancelled commitments right and left. Even driving to West Hollywood a few nights a week to stay at Jonathan’s apartment which used to be a piece of cake was becoming difficult for me… carrying on conversations with anyone but the very closest people in my life felt nearly impossible. I knew this wasn’t me. I love people, I love connecting, I love trying new things and being out and about… but THIS person who was currently inhabiting my body, she didn’t want any of that. She wanted to lay in bed.
Testing It Out //
Deep down in my heart I knew what I had. The signs were all there, and even though I knew next to nothing about Lyme disease from the bit of research I had done, it all made sense. Yet I also wanted to hold onto the fact that I *didn’t* have it because it sounded so scary and gnarly and I wasn’t ready for the idea that a disease may be inhabiting my body, my blood, my organs, and my brain. But I knew I needed to get answers.
I made an appointment with Dr. Lehman and scheduled it for the week that I got back from Bali, right before leaving for my water fast. I was so anxious and excited to meet her and get some answers, the whole time I was in Bali I found myself feeling guilty that I was even THERE… so far away from LA and from the doctors and answers that could be saving me. But in a way I needed this one final push of being gone and so removed to realize how important it was to just take the situation head on and lift my veil of fear.
When I finally got back and had my appointment with her at the end of April we talked a lot about my symptoms, my childhood, my family history, my travel history, my lifestyle, and more. It was very promising to me that she was looking at the full picture and wasn’t so quick to say, “Oh, it’s just your gut,” or whatever else I feared she might have pinpointed right away. Then she ordered lab work for THIRTY VIALS OF BLOOD… yes, you heard that right. Thirty. And a week’s worth of urine and stool samples. And seven more vials of blood to be taken right there in her office.
I think I was naive to the massively full scope of my health that we’d learn about from all those vials of blood and urine and stool samples. I was too overwhelmed in the moment to understand that we were testing my genetics, hormones, vitamin and nutrient profile, blood, gut, brain, bugs in my body, and more.
It was one of the most stressful weeks of my life (or so I thought…) gathering all of this in a four day period before leaving for my water fast in Nor Cal. But I did it all, and I knew it was incredibly important to be thorough and correct in what felt like the thousands of forms I filled out to accompany it all. I knew even if it was subconsciously and intuitively, that all of this medical info held the key to unlocking what was wrong and in turn to getting my life back again.
Finally Getting Answers //
Being at the water fast was healing on a deeply cellular level. In my head and heart I knew I would be getting test results when I got back to LA that told me what was REALLY going on. But while I was at the water fast I was free in a way to believe that I may be Lyme-free, mold-free, etc. I wouldn’t say it was an ignorance is bliss situation but it was definitely something I didn’t want to get ahead of myself about if it wasn’t even true. I met some amazing people at True North who suffer from Lyme and are in the midst of a rigorous treatment process and it was evident to me (and to them, I believe…!) that I was struggling with the exact same thing. So on many levels even if I didn’t “know” for sure, I did know. In my soul.
When June 5th was approaching I started getting extremely eager for the appointment. My mom decided to fly down to join me and I am so glad she did… there is no way in hell I would have been able to receive all of this information alone. But in the back of my head I was still telling myself, “She might find nothing. She might just say it’s a parasite or yeast in my gut and then I’m back at square one and I will be absolutely crushed.” Even in the waiting room before they called us back I told my mom that my greatest fear was that she’d found NOTHING.
I guess I got what I wished for, because by the time they called us back and we were sitting in the treatment room with Dr. Lehman we learned that she’d found the opposite of “nothing.”
She went through the paperwork slow and steady, truly meticulously, explaining everything in laymen’s terms to my mom and I. We started with the gut stuff. Harmless enough, I am used to knowing how messed up my gut is. She found a very aggressive parasite in there and told me that the parasite ALONE would make anyone feel like absolute shit. She said it was eating all of my nutrients, which is why I was 100% deficient in iron, Vitamin D, Vitamin C, Vitamin B-12, and more. I also had high levels of fats in my blood which meant I likely wasn’t absorbing or breaking fats down.
As she went on with the paperwork we learned about my hormone levels (messed up)… no testosterone, exhausted adrenals, on and on. Estrogen and progesterone were normal which was a shock because they’re usually not, but that was the least of my thoughts at that point. I have also been used to hormone imbalances and while it’s not ideal I knew I could handle that aspect of it all.
In my head I was thinking, “GO TO THE LYME RESULTS. GO TO THE LYME RESULTS.” Because I could hardly stand the growing anxiety and anticipation to learn whether this disease that I had suddenly been researching up a storm and learning all about was truly the cause of my issues the way I thought it was.
But before that she looked at my genetics. I tested positive for the MTFHR gene which makes me ultra susceptible to getting very sick from mold exposure and bug-borne illnesses (like Lyme). It also makes it incredibly hard to DETOX. So my intuition for all these years has been correct about hopping from detox regime to detox regime, all the while knowing that I was still full of toxins. It was scary to learn but gratifying, because I’ve known for so long that my body was a toxic waste dump and I could NOT figure out why.
Then we got to the mold exposure and I had such toxic levels of mold in my system that even the doctor was flabbergasted. She expressed her concern and told my mom and I that the high levels of mycotoxin found in my urine were the type that cause cancer, Alzheimers, and all sorts of other terrifying & debilitating diseases. (When untreated for long periods of time, of course.)
Think about that! I have dedicated my entire young life to steering clear of these life threatening illnesses. I eat and live in a way that should be as anti-cancer and anti-Alzheimers and anti-toxic as possible. But instead, my body is swimming in toxins and bugs and basically being eaten alive… priming me for more disease in the future if I don’t get a handle on it. It was a terrifying and depressing moment. That’s when I started crying, not even out of sadness but just out of pure realization of… “Oh my god, I am not making this up. This is legitimate. It’s legitimate to feel as absolutely scum of the earth shitty and sick as I do every day of my life. I am not just a highly sensitive hypochondriac spiritually in tune lunatic who will go to my grave as the only one who knows how sick I truly feel every day.”
The doctor was incredibly kind and told me that all of my emotions were exceptionally valid. That it’s not even remotely arguable how awful I must feel. That it’s validated by hard evidence from the testing and that I’m not alone, and I’m understood. Those words alone burst open the floodgates… words I have needed to hear for at least a decade. Words that felt like pure medicine to my soul. And having my mom next to me through it all was so helpful… I literally don’t know what I would have done trying to relay this all to her over the phone.
Then came the Mast Cell Activation Syndrome diagnosis which is an immunological disorder where your body inappropriately fires off chemicals right back into itself. That made me cry even harder.
THEN came the kicker. She flipped to the Lyme results and her face said it all. I did have Lyme, and 8 different co-infections of the disease. And it was chronic, meaning it’s been in my system for a long time. I couldn’t even begin to list all of the co-infections here (I will learn all the names eventually) but one of them mimics Rocky Mountain Spotted Fever and causes SEVERE insomnia (which I have had for at least a deaade). She said it’s a wonder I can wake up every morning, and that my brain can produce any dopamine at all for me to even attempt getting through the day as a happy and awake person.
By now I was full on bawling my eyes out. I couldn’t even speak. This thing I had practically WISHED for so that I could have answers was now a reality, and right off the bat I didn’t want it. I didn’t want what I had wished for. I wanted the answers to go away because they were shattering everything about who I thought I was.
But even on top of wishing the answers were not there I was deeply grateful for them on a soul level, because the tight constriction of misery and pain and confusion and fear that was constantly locked around my heart from KNOWING how awful I felt but having no name or explanation for it… it started to lift. I wasn’t making this shit up. I wasn’t breaking down physically, mentally, and emotionally for NO apparent reason. I wasn’t depressed because of being a Highly Sensitive Person or a Reflector Human Design type or a super creative tortured artist’s mind who wasn’t stimulated enough (I had sold that one to myself that too)… I HAD A DISEASE. AN ARMY OF BUGS INSIDE OF ME THAT WERE EATING MY INSIDES AND AFFECTING MY BRAIN.
In that moment I actually knew I was stronger than I had ever believed in my life. I pushed past this disease every day to live a normal and most of the time incredibly fast-paced life, and I did it with a smile on my face. I had been doing it for YEARS… and even for the last 6-7 months of being plagued all over my skin just as much as I was in the inside, I continued to do it. I was already living and fighting this thing every moment of every day without even knowing it. I have built a thriving one-woman business and brand over the last 5 years, all while battling this disease. A deep pride swelled within me because I knew I was strong and that if I could live with it as I have for all this time, then I have what it takes to stay as positive as possible throughout the treatment… oh, and not to mention there actually is a treatment I can go through to not live this way forever.
The Whirlwind //
From there on out the day was a whirlwind. Dr. Lehman booked me for an ozone blood treatment and two rounds of IVs. We had a few hours before the ozone so my mom and I went outside, basically numb with shock, and she called my dad while I called Jonathan. Everyone was happy for answers… but scared at the same time. My dad said some of the kindest, most genuine and truly INTUITIVE (he is a Reflector after all) things he has ever said to me in his life. He told me that I am a fighter, and I can get through this, and I am the strongest person he knows. It broke my heart with happiness and love. It was exactly what I needed to hear. He went on and on until I really was crying because to know that my dad understands and stands behind me 100%… that is everything to me.
I couldn’t find the words for hours to share with my friends and the people I love, but I wanted to tell them because so many have been so invested in the process with me every step of the way. I called my best friend Jill and I felt like I was speaking a foreign language listing off the diagnoses. She said the few words I believe every recently diagnosed (with anything) person needs to hear, which are… “We’re going to get through this.” WE. She was in it with me. Like a true amazing friend who isn’t afraid of what is it come, or maybe they are, but they aren’t going anywhere. Her words touched me so deeply and gave me the strength to continue through the day.
I texted many of my other close friends because calling and listing the words off again seemed too difficult and foreign and just all around strange. Like I was talking about someone who wasn’t me. By the time we went back to do the ozone my brain was firing at ten thousand miles a second. I was vacillating between being relieved and happy and somewhat CELEBRATORY because I finally had an answer, and also scared shitless and utterly unaware of what was to come next. I felt like I needed a full-blown list written out of my diagnosis because it seemed so new and confusing to me. I didn’t want my mom to leave LA and everything felt scary.
That evening I posted on my Instagram (It’s what I do! I’m a sharer. It brings me great joy to connect in a communal way in times of darkness and light…) and the outpouring of love I got was OUT OF THIS WORLD. Old, old friends I hadn’t talked to since elementary school were reaching out. People I barely knew were reaching out. And of course all of you, showing your love and support and being so amazing.
That love gave me the strength I needed to adjust to this new routine of treatments, detox, less travel, more down time, hardly any working, and truly saying “NO” where the word NO is due. I can’t overextend myself anymore, it’s simply not an option.
Where to Go From Here //
One thing I know is that I will not let this disease define me. It’s an answer I have been searching for for now what I realize has probably been a decade. I remember being in high school and getting debilitating migraines and brain fog and telling my mom, “I don’t think I even know how to drive anymore.” And although those moments were fleeting they would come back throughout my life. I had several nervous breakdowns in college that I always told myself were related to the person I was in love with who was mentally unstable and sick… and I thought that stress of worrying about him was too much. Now I know, Lyme was the culprit of a lot of this.
I have had debilitating joint and muscle pain for as long as I can remember. Sitting in chairs has never been my thing. I would NEVER (and anyone who knows me can vouch for this) be able to sit at a desktop for so many reasons, but one of them is because I can’t sit still. My body feels BROKEN if I sit for too long or if I go more than a day and a half without doing yoga. I now feel that discovering yoga and wellness as a whole at such a young age completely saved my life. And it’s all divine in it’s timing, right? Without yoga, I don’t even want to think about the amount of pain my body would be in now. I always thought this was slightly normal… that other people MUST feel like this as well. Now I know, Lyme bugs were burrowing themselves into my joints and causing these debilitating aches and pains.
I will continue to learn more and more about where this disease has affected me in my life. It’s fascinating and I am so glad to know what it is now, so I can treat it and beat it. Overall I am still ME, and I truly and deeply feel more ME than ever before. Because I know I am not crazy for all of the symptoms I have experienced for so long. Because I know my skin and body and brain isn’t attacking itself for no reason, it’s the Lyme. I know my brain isn’t shutting down forever and my depression and exhaustion and burnout isn’t caused by me being ungrateful for my life. I had so much guilt about that for so long.
Truly there is so much more to say. You all know I believe so deeply in treating sickness with holistic lifestyle when possible, which I will continue to do (on top of the medications because I am now more grateful for western medicine than ever before). I have a lot of frustration deep inside with the medical system that failed me for so many years. Doctors I trusted who didn’t even THINK to test me for mold or Lyme or this MCAS or any of it. It is no one’s fault… but it is shocking to me that the prevalence of Lyme isn’t at the TOP OF MIND for so many doctors treating patients like me.
I am hopeful. I will be getting my ozone treatments, rectal ozone, supplements and antibiotics (all day long, so many of them), infrared saunas and juicing and cupping and acupuncture and all of the things my intuition pointed me to for SO LONG which is crazy when I think about it now because my intuition and my soul knew what I needed to be doing before I even knew what was going on.
I also believe in many ways this is a spiritual unleveling. Sometimes I think the sickest of us are those of us who have opened so widely spiritually that our bodies are breaking down trying to catch up. But that doesn’t mean we won’t ever catch up, it means that when we do we will be all the more powerful. We will learn what it means to truly walk slowly into the fire and live life intuitively and draw inward and not take on too much. I am dedicated to that beyond belief. I am excited for what is to come.
So many positive things have happened already. My parents found a place to rent down here (they are keeping their house in Sac! Don’t worry, Sac people who are reading!) and my mom will be down here with me for most, if not all, of my treatments. We are actually moving into the SAME BUILDING… believe it or not. I feel closer to my friends who have stepped up beyond belief than ever before, and I feel so lucky to have them. The outpouring of love feels like it has surrounded me like a bright white light and shield against the nasty feelings I’ve felt for so long, and I am ready to fight it.
I am also ready to be a voice for this community, the Lyme and chronic illness community, because while I may have only been diagnosed one week ago… I have been facing this for a long, long time. And this conversation deserves to be normalized and treated with respect and acknowledged for what it really is — which is a serious condition but something that CAN be treated and faced head on. You can join the new FB group I made here — for high vibe chronic illness peeps who want to talk about HOLISTIC treatments on top of everything else. A supportive place as well for people who don’t have the illness but love someone who does, or just want to learn more.
Thank you so much for reading this. If you’re also suffering, you’re not alone. If you love someone who is suffering, you’re not alone either… that is a battle in itself. Share your stories with me in the comments below, I would love to hear. <3
It’s crazy because what started as a wellness blog (a vegan food blog to be specific) 5 years ago almost to the day, has turned into the ultimate wellness JOURNEY… or more of a journey toward wellness, since somehow life happened & my physical body is currently the furthest thing from healthy right now. But I will get there, and my healthy lifestyle, the love of those around me, and my spirituality will get me through. Oh, and amazing doctors who actually DO understand Lyme.
So much love, today and always. XOXO
P.S. I 100% intend on writing a book about my journey from start to finish… so while this is a LOT of info that I shared today, there is so much more that I plan to share. I have so much more to say. This just begins to scratch the surface… <3
P.S.S. there will be follow up posts with how people contract Lyme, how I contracted Lyme (even though I don’t quite know…) and more. XO