STACEY'S LYME STORY
As of this writing, I’m midway through my 12th anniversary of contracting lyme+ disease (or so we think). Why lyme+??? Those of you who know about lyme, will understand immediately that lyme disease doesn’t usually come with just one bacterial infection, but a virtual pandora’s box of new bacteria, viruses, parasites and fungal friends. In my case, my personal cocktail contains Lyme, Babesia, Bartonella, Epstein Barr Virus, Mycoplasma Pneumoniae, and Candida (at least as far as we know as of today).
Sounds like a horrible nightmare to most people – and it truly is, but I consider myself one of the “lucky” ones. Lucky because I’m not bedridden, I can still work full-time during the day and pursue my passion as a jazz singer by night, and for the most part I appear to be fully functioning. That also works against me too, because most people think I’m fine, cured or “over it.” But, the truth is, I’m in pain daily. I forget I paid the music teacher three times in the same month. I wonder almost constantly if my heart will beat properly today or if I’ll have air hunger during a performance or if I will have the energy to play games with my kids in the yard. Oh yeah, and thanks to the bartonella, I lose my patience faster than a Bugatti Veyron goes from 0 to 100mph (but OK I AM a mother of 2 boys under 10, so I get a little slack there). I take so many pills throughout the day I’m a human maraca. But, most importantly, I’m still here and I have so much I still want to do with my life.
Like many lyme patients, it took several months to accurately diagnose me followed by a slew of infectious disease and self-proclaimed lyme experts to predict and contradict each other around my disease state. I had a clinically positive CDC test – hallelujah – and the doctors still debated whether I had lyme. My symptoms? Joint pain, fatigue, anxiety, sore feet, night sweats, air hunger, numb fingertips, low blood pressure, slurred speech, and imbalance (like being on a boat). Every day some new symptom took a little piece of me away and no one could help me. One doctor who had made the rounds on all the NYC morning talk shows for lyme treatment told me I didn’t have lyme and wrote me a prescription for valium because I clearly was stressed out after recently giving birth to my second child. Thank heaven I knew better than to ignore those voices in my head telling me that something was VERY wrong.
I didn’t really begin proper treatment until I was almost 5 months into infection. And it would be another two years before I got turned on to integrative medicine which would start supporting my body and immune system while the drugs and therapies attacked the various invaders. I also thought I would take antibiotics for the seemingly interminable 12- week course originally prescribed and would emerge “back-to-normal” on the other side. I had no intention of being one of those “chronic lyme” patients I met in the IV room at my clinic. The first “lymie” I met told me it was her 8th year of lyme treatment (I was on year 2). My heart sunk. And now it’s year 8 for me too. Wow.
So now that I’ve gotten all of the misery out of the way, let me tell you about some interesting life lessons that lyme has taught me.
1. People are wonderfully open in their fragility. Amidst all of the technology that swirls around us, our humanity really shines when one lyme patient turns to another and offers all of their survival tips and tricks. Unique to lyme (and HIV patients) is that we suffer from a stigma by virtue of the disease we have. While most chronically ill people are treated with empathy, lyme patients are treated like we’re crazy. Who could believe illness like this continues on for years without improvement? No one believes we are chronically ill and for some reason the government (CDC), insurance companies and a cadre of pill-promoting traditional physicians (eg not ones aware of holistic treatments) want to dismiss our disease instead of help us beat it. People are suffering and dying from lyme+. We all know it and we all want to help each other beat it, especially if our institutions won’t.
2. Happiness comes in moments. I’ve stopped living as if I needed to just make it through this day/week/month/holiday season/etc in order to get to some point in time where I can “relax” and then finally be present with my friends and family. EVERY moment counts and ANY moment is an opportunity for happiness if we are open to it. I find myself hyper-aware of being present with my children when they tell me stories, or with friends when they share their daily triumphs and tribulations. I find myself NOTICING when I feel so blessed to see the sun shining through the trees in the morning or an orchid finally taking shape or my child hugging me from fear of a nightmare. This is living! Being a part of the world around me and being CONSCIOUS of how great a moment is and being glad for it, however long it lasts.
3. Disease will not defeat me. It hurts. It’s frightening. It is not “me”… or is it? I’m trying to learn to love all of the “me’s” … the confident ones and the scared ones, the strong ones and the struggling ones. There is no getting back to “me.” This is the “me” of this moment in time and I’m learning to embrace the power of the multiplicity of being. I’m learning to trust the miraculous power of my body to always be trying to heal itself instead of being angry with it for failing to heal as quickly as I’d like it to. To trust that despite all of the bacteria, parasites, viruses, etc that my body is still trying to function optimally and that I must help it, not fight it. And, definitely, don’t fear it. Most important is to remain hopeful. Don’t get me wrong – I have by no means “cracked the code” on maintaining hope. I cycle between hopefulness and hopelessness on a regular basis. I think most chronically ill people do. That’s when I’m most grateful for my support network – my husband and children, my parents and grandparents, my empathetic in-laws and understanding friends and fans. No one is an island and I hurt for those of us in the lyme community that are fighting alone and are without resources to get treatment.
4. Follow your passion. One way that has helped me most is in following my passion for music. For many years I put my musical self on the shelf, focusing on providing for my family, developing a corporate media career and being a mother to two sons and two step-daughters. Lyme has a funny way of making you look at your life and its meaning and I realized in my early 40’s that I had strayed too far away from the passion that had driven me in my younger years. Music and singing had filled me up – and I needed it more than ever.
Luckily for me, I have a wonderful partner in my husband, Alan, who is not only a great father and my best friend, but also a very accomplished guitarist.
He drew me out of my shell. At first it was singing for our babies at bedtime and then, he suggested that we record our duo versions of jazz standards while we took some time off in 2012 so that I could recuperate after a long lyme treatment cycle. We had this dream of living abroad in Italy so we rented our house, packed up our toddlers and went to Italy and France for three months. We took some consulting work here and there and just took it all in. On our first morning as international citizens, I found Alan at our kitchen table emailing with a recording studio across town in Rome. Google translate, my college Italian and a lot of love got us through several recording sessions with amazing engineers who embraced our music and helped bring our sound to life. By the time we were finished, I couldn’t believe that I’d ever let go of music – and I was sad that I had shelved my talent for so many years. #1 on the Amazon Vocal Jazz Chart!
Back stateside, we released the CD in 2015 and decided to donate any and all proceeds from the sale of that first record to the Global Lyme Alliance to support lyme disease awareness and research. As independent musicians, it doesn’t amount to a windfall, but it’s our way of making something beautiful out of such a debilitating disease. We were very lucky to get many wonderful reviews and positive response to our effort.
I’m still fighting lyme+. Every month a new protocol and a new pep talk to keep hoping. I’m going to keep writing and sharing my struggles and insights, treatments and therapies, triumphs and failures along the way. As I have found hope in others’ writings, maybe my words can help others too. I’ve read as many personal stories to know that I am not alone or unique – but I still feel heartened when I hear about others with similar experiences to mine. Somehow the horror of the disease seems more palatable when you’re not alone in the fight.
Thanks for reading and be well!
For lymies … curious as to what I’m doing for my lyme+ these days?
UVLrx (1X/week), Chelation, Mepron, Azithromycin, Serapeptase (lyme cysts), Mega-Red Omega 3s, Drenotrophin (adrenals), MTHFR1 methylfolate, Propolys Bee Pollen, Andrographis, Glutathione Nebulizer/Injections for vocal chords, Probiotics, Fluconazole, Hemp Oil for Inflammation, Berberine/Charcoal/Oregano Oil/Alka Seltzer Gold/Claritin for Herxheimer reactions, Neema Base for alkalinization. Low-dose naltrexone (immune support), Biotox Elim
And yes, that’s every day… ;-(
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