My New Adventure: the Rabbit Hole of Lyme Disease

This post has been on my mind a lot since I found out at a few short months ago that I have Lyme Disease and several tick related coinfections. After debating with myself about letting my readers know, I ultimately decided that yes, Thrifty Artsy Girl is more than just a blog about my DIY crafts, home improvements and the occasional recipe. I've put my heart and soul into this blog and if I can bring awareness about something so personal and it helps even just one person, then I need to share my new journey.

I waited until May to share my story since not only is May Lyme Disease awareness month but I wanted to learn as much as I could about this controversial disease before I wrote about it. Once I started researching I was easily overwhelmed, from Chronic Lyme (also known as Post-Treatment Lyme Disease Syndrome), to multiple misdiagnoses, to subpar testing, to most insurance companies not covering Lyme treatment and even doctors not being taught about Lyme Disease at all.

This post isn’t meant to be a total informational overload of Lyme Disease facts because A: I’m not an LLMD (Lyme literate doctor), and B: I’d be lying if I said I’ve learned enough (in the past 3 months since being diagnosed) to be comfortable spouting off tons of facts, although I am going to share some of what I’ve learned to bring awareness to Lyme Disease.

The only thing I knew about Lyme before finding out I had it was 1. It comes from ticks and 2. There was a girl on one of the early seasons of Real World with really curly brown hair who had Lyme Disease. Yes, I’m showing my age and ignorance but most people (including myself, until now) don’t know much, if anything, about Lyme Disease.

This is pretty disturbing because Lyme Disease is the highest vector-borne (meaning it comes from blood sucking bugs) disease in the U.S. with over 300,000 cases a year. A lot of people don’t even know they have Lyme Disease because they never saw or felt a tick biting them. Some people get lucky (haha, not really) and when they get bit by a tick they either see it and/or get a bullseye rash at the bite area. They are then treated with antibiotics and considered “cured”. I put cured in quotes because no one is ever really cured, most people are just able to live their lives without any further complications while a small amount still have symptoms after treatment (Chronic Lyme).

I have been bitten by ticks, however my last known tick bite was over 12 years ago and I did not develop a bullseye rash. My doctor informed me that I could have very well contracted Lyme Disease back then as Lyme can lay dormant for weeks, months or even years. If that is the case then I could have passed it to my children in utero. I personally know two women who have passed on Lyme Disease to their children. That is beyond scary to me.

One more thing I want to share about Lyme Disease is that it is known as “the great imitator” because its symptoms imitate several other diseases. Many people get misdiagnosed for years and/or never find out that what they really had was Lyme Disease. I found this informative list on kimmiecakeskickslyme blog about her personal story with Lyme Disease:

I found out I had Lyme Disease by accident. I had seen a general practitioner a couple of years ago inquiring about possibly having Hypothyroidism and they tested me and said I was perfect. I knew I wasn’t but I just continued to suffer and put off going to another doctor until I could find one that was either more knowledgeable or would do more extensive testing.

My main symptoms for thinking I had Hypothyroidism were extreme fatigue, my face was puffy and I was always super cold. Then during the entire month of July in 2019 I developed horrible headaches that lasted all day for the entire month. Nothing would get rid of these headaches and after researching I found a bunch of possible crazy reasons (not one of them Lyme Disease) but chalked it up to seasonal allergies. I also started getting joint pain and my back started hurting all the time but I just figured it was because I was getting older or sleeping wrong.  Deep down I knew that I needed to see a doctor because how I was feeling was not normal.

Around that same time my sister, who has a thyroid problem, along with every other female in my family (thyroid problems are commonly inherited) tagged me in a Facebook post about doctors in the area that were experts on thyroid issues. That is how I found my functional medicine doctors, who also happen to be LLMDs!

I didn’t actually go until January of this year because I’m a procrastinator and I felt like I didn’t have time being so busy with life. It got to the point where I was completely miserable with how my body felt, so I finally went. After going over all of my symptoms my doctor said I’m pretty sure you have Hypothyroidism and maybe Lyme Disease. I laughed it off because I hadn’t been bit by a tick in so long.

After 35 vials of blood and a fecal sample (which I thought was excessive at the time) I was diagnosed with: Hypothyroidism, Lyme Disease, Babesia, Bartonella, Tick Borne Relapsing Fever, active Epstein-Barr, Irritable Bowel Syndrome, Hypocalcemia, and a gluten sensitivity along with multiple other food sensitivities. It took several appointments to find out all this information and it’s been a lot to take in since I went into all this thinking I just had Hypothyroidism. It’s definitely going to be a long process as I haven’t even started Lyme treatment yet. You would think that would be the first step, but I need to get my digestive system healthy first so in turn my immune system can get stronger.

I shared my personal story and diagnoses today not to have a pity party, but to bring awareness, not only to Lyme Disease but to your body. I pride myself in being a strong woman, but when I felt like I'd been hit by a truck every single day I knew I had to do something other than power through it or eventually I wouldn't be able to function. Don't be like me and wait until you feel absolutely dreadful. Find the time and go to the doctor if you don't feel good. If you still don't feel right or aren't getting better after diagnosis and treatment then you must advocate for yourself. You are the only one who knows how you are feeling. Research doctors until you find one that will listen, truly help you and that you are completely comfortable with.

Thanks to all for reading about the beginning of my Lyme journey. Hopefully next year at this time I can celebrate with a healthy outcome!