Alexandra Moresco (pictured, right) is a champion for people with Lyme. After she was diagnosed, she made it her mission to help others and raise awareness of Lyme disease. This past summer she partnered with the Global Lyme Alliance to put on even called the SubLyme Soiree to Chicago where she lives. The event featured gluten and dairy-free food and drinks from some of the top chefs in Chicago and raised over $60,000 for research. Now she's partnering with GLA again by starting the In the Lymelight podcast with her best friend Sarah Aiken (pictured, left). In this interview you will learn Alex's Lyme story and all about a live taping of In the Lymelight that is happening at Zanies Chicago. I will definitely be there cheering her on and I hope you will join me if you live in the Chicagoland area.
What is your Lyme story? How do you think you contracted Lyme, how long did it take you to get a diagnosis, and where are you in your treatment?
My Lyme story is a little bit convoluted--just like everyone else's. About two years ago, I got incredibly sick and had the "flu" for months. Shocker—I am not a woodsy person but had just come back from Northern Michigan for the first time and had no idea that I should be checking for ticks. I never saw a rash or a bulls-eye.
I got a little bit better and brushed it aside. Later that year, the space around my thyroid swelled up and never went down. It hurt and was a lump the size of half a golf ball. I was misdiagnosed with thyroid cancer and it took eight specialists to finally decide that I did not have cancer and that it was "all in my head."
I had asked my primary care doctor to test me for Lyme disease and she refused: saying that Lyme disease does not exist and any doctor that tests you is a "charlatan."
I pushed forward and it became dire for me to get answers when I started losing my memory last September and couldn't get out of bed. I found a doctor that had treated me when I was little and had Mycoplasma pneumonia--he had been the only person that could help me. I found him at The Raby Institute at Northwestern. We weren't sure what was wrong for the first few months--eventually the Lyme disease question popped back up and he tested me and sure enough it didn’t come back as a CDC positive, but enough bars came back positive to raise some red flags.
I started seeing a team of doctors in Wisconsin that did some intensive testing and we found Lyme, babesia and bartonella amongst a few other things. I had a heart murmur which means the Lyme had started moving into my heart which I find terrifying but thankfully we have corrected that. I think that goes to show you how many parts of the body Lyme can cause damage and that we should always take a Lyme disease diagnosis seriously.
Personally, I suffer from severe memory loss, joint pain, muscle soreness, chronic fatigue among many other symptoms.
Personally I am on a mix of antibiotics and homeopathic medications. I recently began IV antibiotics. I go for cupping and lymphatic drainage once a week and cannot say enough good things and what those two therapies have done for me! Overall, I have seen quite a bit of improvement but still have a long way to go. I try to take it one day at a time.
If people are interested, they can see part of my battle with Lyme on the show I am on that just came out, PR Girl.
You have started a podcast called In the Lymelight in partnership with the Global Lyme Alliance. Why did you want to do a podcast and what will you be discussing on the show?
When I got diagnosed with Lyme disease, I found the amount of information online terrifying and overwhelming. While I wasn't in the mental space at the time, I knew that there had to be a better way for people to get information on our illness. After getting over the mental hurdle (I am still not quite over it) of accepting that yes I am sick and need to accept that, I decided that the best place to channel my energy was trying to help others. I knew that I wanted to create a safe space for Lymies to stay up to date on information without being overwhelmed, but wasn't sure what the best way to do that was.
I finally settled on a podcast because I know that many with Lyme cannot focus on reading, etc., and dragged my best friend Sarah Aiken into it. Our goal is to yes, discuss the difficult topics, but also to have some lighter episodes like interviews with health influencers and all-natural skincare experts.
I do a lot of work with Global Lyme Alliance and love what they stand for and that they are a space for factual information. Having In The Lymelight on their platform just made sense.
While our introductory episode was just released, we also chatted with Amanda Smith of Amanda’s Kitchen, gut health expert Sarah Greenfield and famed comedian Chris Jones on using comedy to overcome depression.
"Alex and I really wanted to put something out there where people affected by Lyme Disease including friends and family could find information that isn't overwhelming and is easy to understand…I know that I could have used this when Alex was first diagnosed." - Sarah Aiken, co-host of In The Lymelight.
There is a live taping of the podcast coming up in Chicago, can you tell us about it?
I could talk about our upcoming live podcast for hours—I am so excited! One of my goals is to keep putting together smaller events related to Lyme disease and GLA throughout the year so Lymies have a space to get together and also use these to build awareness of our invisible illness.
Sarah and I are hosting our very first live podcast at Zanies in Chicago on November 30th, 2017 from 6-8pm. We really aim to bring knowledge and humor to a somber topic so Zanies was the perfect venue fit.
Our guest that night is famed comedian and hypnotist Chris Jones. A Chicago native and previous Zanies performer, Chris took the entertainment world by storm after he hypnotized notorious germaphobe Howie Mandel into shaking hands on America’s Got Talent and continues to wow with appearances on Windy City Live, NBC and Steve Harvey. We will be discussing how to use comedy to overcome depression: something most of us with Lyme suffer from. It will be a great night full of honest conversation and hopefully some laughs!
How have your friends and family reacted to your illness?
I am truly so blessed to have such an amazing support system. My family is so supportive and understanding and knows that this will be a long road to remission. They make me laugh when I need to laugh and let me cry when I need to cry.
With my friends it was a hurdle. I think that when you are 24 and sick the way we are sick with Lyme disease, other 24 year olds do not immediately understand what you are going through. At first it was a lot of "I don’t understand why you can't just go out for dinner with us" etc. I think that it is a real struggle being so sick and also losing friends along the way when really your friends should be rallying around you: but if this is happening to you, know that you are not alone and we WILL get through this!
Thankfully I do have a few good friends who are so kind and understanding and they have become my best friends.
What do you want people to know about Lyme disease?
In general I would love for people to simply be aware of Lyme disease and know the symptoms to look out for if they are feeling off.
I would also like for people to know just how severe of an illness Lyme disease is. In other countries, they treat Lyme the way they treat cancer. Those of us with Lyme are constantly going through something so our day to day lives aren't ever "normal."
Bottom line: chronically ill or not, everyone is going through their own personal battles so always try to be kind to everyone you meet.
What are you most grateful for in your healing journey?
I am so grateful to my family for being the best support system. I know that when one person is ill it takes a toll on everyone around them.
I am also just so grateful that I can get the kind of treatment I am. I always say that I am one of the lucky ones because my family can afford treatment, which is unacceptable: everyone should have access to a doctor that can treat them. I am making it my mission to help those with voices that aren't being heard and to support GLA to help find a cure.
Please share a mantra or quote that inspires you:
Growing up, my mom always said, "say little, do much" and has a plaque that hangs in our kitchen with that saying. It has always inspired me to not just talk about what I want to do, but actually get out there and do it.
Buy tickets to the upcoming live taping of In the Lymelight here.
Find episodes of In the Lymelight here.
Connect with Alexandra on Instagram: @alitmoresco
Note: This essay first appeared on The Mighty on 10/9/2017
Recently, I received a reply on Twitter to an article I’d written about living with Lyme disease. It said, “So true. So powerful. Thank you for writing this (green heart emoji).” Right away I knew this reply was from a fellow Lyme patient. The green heart emoji might not mean anything to most people, but for the Lyme disease community it’s like our secret handshake.
Not surprisingly, the Lyme community chose lime green as our awareness color. It’s a cute play on a homonym. We use limes to represent many things. For example, one of our biggest fundraisers, The Lyme Disease Challenge, is to take a bite out of a lime and post a picture or video on social media. Currently, there is no lime emoji, so instead we use the green heart, which on some operating systems appears lime green. Other groups of people use the green heart emoji, but in our corner of the internet we have claimed it as our own.
Many of us put a green heart in our social media profiles to symbolize our Lyme warrior status and when we write messages to one another many of us put a green heart at the end of the message to show we understand. Even large Lyme non-profit organizations, like the Global Lyme Alliance, use the green heart in their tweets and other social media posts. This practice has spread far and wide throughout the Lyme community.
My Lyme story echoes most Lyme stories. From the time I first started seeking medical treatment for my strange symptoms, 10 years passed before I got a diagnosis. When I was finally diagnosed with Lyme, I went from being isolated to having a huge community of other people like me.
Chronic Lyme disease is often denied by the mainstream medical community. They refer to it as post-treatment Lyme disease syndrome and say there is no treatment. Most of us with chronic Lyme disease were not willing to accept that fate, and have created online and community support groups to help locate knowledgeable doctors and compare symptoms and treatments. I often turn to the online support group in Illinois when a new symptom arises. Usually someone else has experienced the same symptom and can point me in the right direction. The online community is also wonderful for those really bad days when I just need to vent or have a cyber-shoulder to cry on.
When I first started my blog and social media accounts I didn’t know about the green heart, but slowly I noticed that after each tweet or direct message there was that heart. Soon, I started to use it, too, and I liked how it added something to the message, like a winky face, but just for Lyme. Eventually, I added it to my Twitter and Instagram profiles and when people came upon my profile they already knew a little bit about me and the type of symptoms I was dealing with.
The green heart emoji is a little symbol of what we all face together and a small act of solidarity and love. Lyme patients, let’s keep spreading the love across the internet, one green heart at a time.
"No beauty shines brighter than that of a good heart." - Unknown
Last week I went to a yoga class with a plank sequence that went on twenty minutes. While the rest of the class did low plank, high plank, side plank, and one-legged plank, I was in child's pose. There were at least two people in the class over seventy-five who seemed to have no problem with the planks. At first I was embarrassed being folded up in a little ball while the others we’re sweating through their gym clothes, but then I remembered—my challenge was just in getting there.
When I walk into a yoga studio there is no indication from my outward appearance I’ll be the one in child’s pose half the class. I’m average weight and usually one of the youngest. The reason I struggle is because, in addition to Lyme, I have an autoimmune condition called SAPHO Syndrome. It's a type of reactive arthritis that attacks my muscles, joints, and bones. Over time, this extremely rare illness caused fusion in my lumbar spine and sacral joints. I also have fusion in my clavicle, limiting the range of motion in my shoulder. I’m lucky if I can just touch a block in forward fold. SAPHO also causes chronic pain. In spite of my physical limitations, I will never stop going to yoga. For me, the positives far outweigh the negatives.
I fell in love with yoga, when I bought a DVD called Yoga Conditioning for Weight Loss to get in shape for my wedding 10 years ago, but it was only after I became ill that I truly understood the benefits of regular practice. When I'm in yoga class, I am at peace. My sympathetic nervous system, or "fight or flight" reflex shuts down and puts me in the healing state of "rest and digest." It's the only type of exercise I feel comfortable doing with my condition, because I don't have to worry that it will put a strain on my already taxed immune system.
Yoga also helps me maintain the range of motion I still have, and hopefully will help me gain some back. Due to my unstable spine, my hamstrings overcompensate and become extremely tight. With regular practice I'm able to inch the tiniest bit closer to touching my toes. In addition to adding flexibility, the stretches ease and prevent pain.
Like many people with Lyme and related autoimmune disorders I also have chronic fatigue, which means most days I don't have the energy to go to yoga and after I finish class, I'm exhausted. I usually only make it to one or two classes a week. It takes a lot of motivation to get myself to go, but when I'm done I feel so accomplished--exhausted--but accomplished. I used to worry that the teacher or other students would think I was lazy or not trying, but through yoga I've learned to listen to myself. Now, I don't worry about what other people think, and simply do what my body tells me it needs.
For other people with limitations who have been considering yoga, I encourage you to try it. There are chair, gentle, restorative, and slow flow classes at most gyms and studios. These classes are designed for beginners or those of us who need to take it easy. You can slowly work your way up to the next level. For those of you who are intimidated by a group class, private sessions may be an option. There are also certified yoga therapists, who meet individually with clients and use yoga poses and breathing techniques to treat emotional and physical ailments.
It’s also important to note that using pose modifications and props help you get the most out of your practice. Don't be ashamed to use a block or a strap—even the most experienced yogis use them to deepen poses. When I reach my limit, I simply go into child’s pose and rest. Make sure you communicate your physical restrictions with the instructor before class.
At the end of each class when I bow to the teacher and my classmates and say, "namaste," in my head I always say my preferred English translation, "the divine in me blesses and honors the divine in you." We're all sacred beings, and no one in any yoga class is better than anyone else based on ability or flexibility. What's important is showing up and listening to your body. Remember, honoring yourself is the honoring the divine.
"Yoga is not about touching your toes, it is what you learn on the way down." - Jigar Gor
I'm Kerry and I am a licensed therapist, writer & speaker. This is a positive space focused on how to thrive in any situation and the transformative power of suffering.