If you’ve kept up with this blog or The Lyme Diaries series, then you know that Lyme touches lives all around the world. I’ve gathered stories from Lyme fighters in The Netherlands all the way to Washington state. This week’s story comes from my native state, Texas, a state where it is largely thought by doctors and the general public that Lyme does not exist.
However, Lyme Disease recently garnered news coverage (once again) when Texas A&M University presented findings that proved once and for all that Lyme Disease is endemic to Texas and northern parts of Mexico. This article states that, “the risk for Lyme disease is significant in the state of Texas and northern parts of Mexico. Funded in part by a grant to improve the diagnosis of Lyme in veterinary medicine, the findings refute previous discussion and speculation that Lyme disease is relatively non-existent in the southern United States.”
The article also goes on to state that 45% of ticks in Texas carry Borrelia Bergdorferi (the organism that causes Lyme Disease). This new evidence is startling and also proves that Lyme Disease has indeed become an epidemic here in the Lone Star State, a state where doctors are rarely equipped to diagnose Lyme, much less understand how to treat it.
It is my hope that with every news report, article, case study, personal story, and blog post, we are bridging the gap between ignorance and a cure. If you would like to lend your story, I would love to hear from you! Please visit the contact page and shoot me an email.
Sending love and light and prayers to all who suffer.
First Name: Jessie Shaw
Age: twenty-two (Que. The Taylor Swift song)
Where do you live? Austin, TX
Photo cred: Anna Kraft Photography
When/Where do you suspect that you contracted Lyme?
I traveled a lot pre-Lyme and can’t pinpoint an exact time. I’m guessing it was in October 2010 at a campground in East Texas, because my symptoms began shortly after that point.
When did you first begin to feel ill or start to notice strange symptoms?
Well, I had chronic mono at the time, so it was difficult to tell where mono ended & Lyme began.
What were they?
I think the muscle pain was the first indicator something was off track. Like I mentioned, I was already pretty under the weather. But then I started spending evening after evening on the couch, leg muscles locked up in pain with little to no relief, and we started questioning the idea that this was a normal bout of chronic mono.
How many doctors did you see before reaching an accurate diagnosis?
My dad is a chiropractor, so all initial research started with him. We kept coming up empty, so I met with a natural doctor here in Austin. She was convinced it was simply the mono, despite having never encountered mono-related muscle pain before, because what else could it be? My parents (who are my main caregivers) & I remained unconvinced.
Were you misdiagnosed with anything prior to being diagnosed with Lyme? If so, what?
Well, at this point, Multiple-Sclerosis started making a quiet place at our table. It hung over us, slowly breaking in. This was just supposed to be mono, how’d we end up at MS? We kept looking and kept coming up empty. In the meantime my muscle pain continued, and I was just plain sick all the time. We were closing in on testing for MS when one day, my dad is watching this TV show, and a character in it had Lyme… misdiagnosed as MS. This caught his attention. He ordered a Lyme test on the off chance this TV show (of all things!) could be on to something. Turns out he was right to trust his doctor’s intuition. After a few tests, consulting with a couple doctors on the East coast and my new (fantastic) doctor here in Austin, we determined Lyme was my unfortunate golden ticket.
What are the main symptoms that you experience currently?
Well, I’m in remission at the moment. Meaning: we think the Lyme is under control & I’ve turned my attentions to helping my body heal. Symptom wise, I’m all over the map. I swing through fevers, nausea, exhaustion, brain fog, dizziness, and generally just feeling sick a lot. All a normal part of a body that’s been under attack & fighting this long. I’m prone to catching a lot of viruses. But alongside all those symptoms, I’ll have days I feel GREAT again too. My mom used to say, “Jessie, slowly but surely the good days will begin to outweigh the bad, and that’s when you’ll know you’re getting better.” I’m in the beginning of that process.
What does your treatment regimen look like?
Right now I’m focusing on supporting my body. I monitor my energy output a lot (I have a job again, crazy!), I do regular detox baths, take daily supplements, and I just started using essential oils. I also exercise when I can; moving your body helps the lymphatic system pump strongly and rebuilds my muscles from all their atrophy. I swim, walk, rebound, and do yoga etc.
How much do your symptoms prevent you from living a normal life?
I have to be more aware of how actions effect my body. If I’m going to hang out with friends, I need to factor in time to recover and time to prepare. I have to be flexible; if my body says it needs to rest I’ve learned to be okay with canceling plans. Also keeping things low-stress is high on my priority list. It can be so liberating to just say no! Nobody should feel guilty for saying no to stress.
What do you like to do in your free time and how is this different than before you were sick?
I got my very first diagnosis the day I graduated high school, so it’s difficult to compare then with now. Everyone’s life is totally different from high school, you know? So that can be confusing sometimes. I do know when I’m not feeling sick I’m a naturally productive person. Now I spend much more time under my covers with my BFF Netflix. Some days, that’s really not so bad. It’s a good balance.
What do you want people to know about Lyme?
I don’t know. This is a hard one for me. Sometimes I get fed up with the ignorance of the general public and want to walk away. I have to remind myself I wouldn’t know either, if this wasn’t my experience. I think I want people to know Lyme is serious. I’d say the majority of the responses I’ve experienced are dismissive or uninformed. I would love to see a world where the Lyme community’s experience is more widely understood, and the gravity of it realized. I think that would make it easier on all of us.
What are you most thankful to have gained, or what important lessons have you learned, from your experience with Lyme?
Lyme has changed my life. It’s taken me a while to accept that. You want to pretend it’s not happening, that life will return to “normal” after you survive (if you survive). But that’s not how it works. I’m grateful for the strength I’ve developed. I’m grateful for the perspective shown me. I’m grateful for the empathy it allows me. I’m grateful for the freedom battling Lyme has given me; once you fight for your life you’re more picky with how you live it. This is a gift.