Me Before Lyme
Before I created this Lyme Disease blog, I used to love travelling, drinking, experimenting, eating junk, and cycling through boyfriends. I still experiment, but my experiments now relate to alternative health treatments and nutritional balancing. So cool, right? I still eat (almost) anything I want, but I am more mindful and conscious when I do. Actually, I tried alllll the Lyme elimination diets, and it took me a long time to ditch the diets and fear around food, which I developed from gurusizing various LLMDs and health blogging know-it-alls.
Ha! So Long Irresponsible Young Adulthood
My parents are the best ones. They took me in when I was really sick, free of charge. They knew that my health was costing me TENS of THOUSANDS of dollars every year and that I needed financial support. Not everyone is as lucky as I am to have parents that can afford to help them through their troubles. I’m really grateful for them. More grateful for them than I am for anyone, really, except for my dog, Lucky, who is everyone’s favorite company in my household.
How Lyme Has Changed Me (For Better and For Better)
Yes, getting sick was sad. Depressing. Isolating. I spent 2ish years being poked and prodded by specialists with shrugged shoulders, 48 hours in bed with periods of blindness and dizziness induced by simply trying to stand up, a day crying when I found out I had Lyme and a couple more years of treatments and diets, constantly doing blood-work to check for improvements (I became obsessed with hematology).
But I also gained a lot. Remember those 48 hours I was in bed – my lowest point? It was also the point where I discovered audiobooks. It sounds nerdy (and it is) but I have since listened to 400 books, discovered new favorite characters, learned about business and psychology, LYME, finding calm through a storm, and more all thanks to Audible. I always liked to read, but I never imagined I would have conquered that many books in my life time. It kept me sharp and made me feel connected to people (well, authors) at a very isolating time.
Audiobooks = Less Work Than TV <3
It’s Been a Long Road
I don’t want to sound like a Lymie stereotype, but it’s hard to recollect the step-by-step process of getting better. I will have a big think and post my step-by-step journey here, too.
But hey, how about a poor quality list for now.
- had hypothyroid, lots of abnormal inflammation markers (C3, C4, ANA, ASO), thick blood (PTT), low testosterone, progesterone and DHEA, high estrogen, high mercury and lead levels in my urine, low iron, thyroid antibodies, POTS, low blood pressure (80/60 and lower!), a low body temperature, yet a flushed hot blueberry head, an abnormal CD57 and Western Blot antibodies conducive to Lyme, Babesia, and Bartonella.
- took enzymes, microbials and chelators, along with some nutritional balancing supplements. I also went low carb for over a year, cut out gluten, ALL oils except E.V.O. and coconut oil. Eventually I added Ghee.
- think 6 months of strict antimicrobial pulsing got me 75% better. But when I got off antimicrobials I relapsed. Then I went back on, felt better, got off, and relapsed again.
- added manuka honey to my protocol (back on antimicrobials, alas) and felt GREAT. I went for my quarterly bloodwork investigation and found that I was no longer dealing with hypothyroidism. I also started taking a supplement to boost progesterone and saw in my labs that it was working!
- And finally, I read into Ray Peat, a pro-sugar mad scientist kind of guy, and said f* it, I’m going to double my intake of honey, then triple it, then quadruple it. Eventually I realized that the added carbs were helping me – so much so that I started exercising again, got a job, and didn’t relapse for a long time.
I was feeling grand, but I was still SO HIGH MAINTENANCE. Not in a makeup and nails kind of way. But as good as I felt, I was still supporting my body with supplements, sleeping a good nine hours a night, and eating with a personalized routine methodology (counting my macro-nutrients and only eating cooked foods at this point). But I was working in a positive atmosphere and I had a new found confidence after achieving something as profound as remission.
Welcome General Life Stress
I took on the climbing gig at a point where I thought “hey, I’m cured!” I proved myself right a few times, like when I was booked to work 6 days in a row on my feet, doing fall demonstrations and chasing kids out of the foam pit, all while maintaining a giddy energy level from loving the job.
Two years into it, there were a lot of politics at work (we all learned then that a business can crash and burn if employers don’t communicate well or appreciate enough). I also ended a relationship and started a newer much more toxic one in those two years. No amount of self-help audio-booking could help me get my confidence back while I was dating someone who didn’t want me to have any.
I lost a bit of myself then, but I also learned a lot. Some of my lessons were not so great: I don’t stick up for myself; I put relationships before my health; and the people closest to me can shame me for being sick and “not enough.”
I also learned some important things: be more assertive; put “me before we” in relationships as a modern women does; and if the people closest to me are going to guilt trip me for my handicaps, I better push them far, far away and stay close with the ones who actually care.
I was never as sick as I was before I started treatment, but I do think I relapsed at this point. What does that mean? Well, I consider myself in relapse territory when I start getting POTSsy symptoms; the flushed hot face, dizziness when standing, lack of change in heart rate when exercising, a pounding heart while resting and that lowwww blood pressure. Someone else’s confirmation that they are relapsing might be dementia and brain fog. Yet another Lyme patients confirmation might be peripheral neuropathy. But for me, POTS meant I had a chronic stressor.
I redid a round of antimicrobials and I ditched the toxic relationship simultaneously =D
I can’t say for sure if I was just relieved of stress or if the antimicrobials kept an underlying infection in check. Either way, I think I finally learned that it’s not just meds, it’s not just food, and it’s not just Lyme, but it’s also stress and totally unrelated life complications that can physically destroy me. I needed to be strong about my external world just as much as my medically OCD internal world.
My Second Chance(s)
If I had never gotten sick, I would be more vain, less compassionate, and not who I am today. I have invested years of my life into researching Lyme Disease protocols and controversies. And not just Lyme Disease, but hormones, drugs, stress, metabolism, detoxification – all of these little things that make up the whole.
This Lyme Disease Blog
And of course I started itsnotjustlyme.com! I wanted to share my journey and share info that helped me. Now that I’m “in the loop,” I’ve learned so much more about Lyme Disease by TALKING to people who have also been affected by it. Beyond that, I have learned about holistic treatments and herbs. I have created a network of zany renowned doctors from Germany, USA, Australia and Canada (represent!), all of whom have differing treatment methods. I’ve also become more fit than I’ve been my entire life by having the gift of remission AND the newfound determination of a Lyme warrior.
(Needed Some Street Cred, Yo)
I am now a Certified Natural Product Advisor, which means that I provide information about supplements and herbs to others who are trying to create personalized protocols.
I’m also an author, and I have sold/given away a couple thousand copies of my book on Amazon (subscribe to my blog to get updated when I have FREE book release days). The profits are not significant, but the connections I have made with my readers are.
My book is about the importance of regulating your metabolism when you have ANY chronic infection. It’s a little piece of me, and it feels wonderful to read emails from people who have seen a difference in their progress after implementing some of my suggestions. I never would have written this book or helped anyone help themselves if I hadn’t gotten Lyme Disease.
Being sick has changed the direction of my life. After university I planned to move to Taiwan and learn Mandarin, become a copywriter and travel Asia. I lost that experience when I got sick. What I gained was a horrifying gift: I gained compassion for people facing hardships, fear for my life, acceptance of my death, and a curiosity for health and fitness that I honestly never had before this Lyme nonsense. I’ve become a better and dare I say healthier person, mentally, physically and spiritually.
My Paranoia Bug
I, like many other people who have dealt with a chronic illness, had developed a lot of phobias. For one, I was afraid of walking on the grass and getting bitten by a tick (again). I also lost my desire to travel, and wouldn’t abandon my medicine cabinet and be spontaneous. Ultimately, I became kind of soft. (Once in a while I go out for Korean food with my friend Tim, a 2x cancer survivor, and we joke about how much tougher we were while we were fighting for our lives.) When you have nothing to lose, you do some wild things – life-threatening treatments (ee, I can’t believe I did a chelation IV), extreme diets (a 30 day juice fast when I couldn’t stomach food) and you come to terms with the possibility of dying real soon.
7 Years Later
One day, after being in remission for a SOLID brick of time and having no excuse, I FINALLY hopped on a plane.
For years I had wanted to go to Arvon, a world renowned writing retreat in the UK. And while I was there, I thought, hey, why not go to a yoga retreat in Portugal?
I went to OMASSIM, a yoga retreat in Portugal owned with love by a yogi couple. They worked day and night to have ALL our vegetarian meals prepared, to clean up after us, and make the trip nothing but relaxing. If you are worried about travelling with Lyme, I think this yoga retreat is a a great baby step into the world of vacationing. For $600, I ate well, slept well, enjoyed the beautiful ocean, hung out with authentic European chicks, had a veryyyyy relaxing massage 😉 and practiced yoga and meditation for 8 days.
It was a safe, amazing first (post-Lyme) travel experience. I left with better balance, a journal full of my stress that substituted a decades worth of therapy, and an immune system that carried me through 2 months of dirty backpacking. THANK YOU OMASSIM. (PS, I’m ready for round 2 if anyone wants to go with so check it out!)
And after discovering that Irish people tend to laugh at my jokes when other people give me strange looks, I decided to stop by there while my new yogi immune system was killin it.
I went alone, first to Portugal, to journal and practice yoga and clear my head for Arvon. I found my voice at the writing retreat and started my first fictional novel. And not only did I remain in remission but I got stronger. I was happy and high on life, and even with the two weeks of drinking in Ireland and chilling out on my food restrictions, I remained healthy. Something about the trip grounded me. Being a boss solo female traveler? New friends? Yoga practice all day every day? Boozing? Being my authentic self? Vacating my life and responsibilities? It doesn’t matter. I healed my body plenty, and this trip was made to heal my soul.
I removed myself from this blog at that point and thought I could abandon it entirely. But I remembered being sick and desperate to talk to someone who was ACTUALLY in remission, and having a very hard time tracking those people down. We tend to want to put bad memories behind us. Luckily and unluckily for me, I am a very nostalgic person and I like to hold on and remember. I still haven’t said everything I want to say about Lyme and living with Lyme Disease, so I continue to write, to do phone coaching sessions and to remember. I still consider myself a Lyme Disease patient, and I refuse to use the word “cured” for myself and others. Remission is a much nicer word, me thinks.
I like to think that I am in remission and therefore I have choices to make, some of which can help me to improve more and more, and some of which I may think are clever in the moment but later leave me face-palming. As is life.
I’m going to keep connecting with the Lyme community by committing to this Lyme Disease blog. I hope to create a course on this website that people can take to gain skills and support that can assist them reach their goals. There are already forums places for Lyme Disease patients to connect, but I find a lot of support groups and forums (in my experience, at least) to be draining and negative. We are warriors! Not victims.
Life is hard for everyone, and for us, Lyme is just one of the ways its hard. It’s a lot of work, but the reward is life. And with the exception of many, many hard moments, life is actually quite grand.