lyme disease: my story

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I used to think this whole Lyme thing would go like so: 1) diagnosis 2) quietly get better 3) get back to life as scheduled. How naive I was!

I didn’t want to let people into such a private, and frankly, the very worst part of my life. I wanted to heal quickly, return to life as scheduled, and ride off into the Manhattan sunset. However, in the past few months, I’ve seen the beauty and extreme necessity of people sharing their Lyme stories. I’ve realized I would be selfish if I didn’t share my story about this whole process. The real story. An honest story of extreme pain, loss, redemption, yet indescribable hope– all at the same time. So, here goes:

how it all started

It all started a year ago when I knew something was “off” health-wise. I was once able to work 50-60 hour weeks, work out 5x a week, and hang out with friends every day– no problem. But, soon, I couldn’t stay awake past 1pm, couldn’t walk in a straight line, and I started collapsing out of the blue: anywhere from planes, whole foods, MRI rooms…  No one knew what was happening, and time was of the essence. Another symptom would be added each week: whether it was loss of feeling in my hands and feet, stroke symptoms, heart palpitations, losing oxygen to my lungs– my health was spiraling out of control quickly. And we had no idea what to do.

After seeing top internists, neurologists, cardiologists, pulmonologists, orthopedic surgeons, rheumatologists, infectious disease specialists, etc. etc., all came up with the same answer: my blood work and scans were the picture of “perfect health” — not even a single vitamin deficiency. They shrugged their shoulders, were at their wit’s end, and recommended “maybe” the Mayo Clinic, even though doctors mentioned they’d perform the same tests and would most likely come up with the same results.

I felt myself on a steep decline day-by-day. I couldn’t remember the names of people I knew, I lost 15 pounds within two months, and, by mid-December, I came to terms with the possibility it could be my last Christmas. I told the Lord I was thankful for all of my adventures, and I expected no more from life. By this point, even the best doctors had thrown in the towel, and I too was tired of fighting.

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connecting the dotsSearching for an answer, I began to research more and more on different types of diseases I could have. MS? Nope. Myasthenia Gravis? Nope. Lupus? Ruled out. And then the same with about 80 other conditions. Then, I saw Lyme Disease. Symptom 1: Check. 2: Check. I soon went down the list and saw that all Lyme patients were experiencing exactly what I was to a T. And then I remembered a big bug bite that I had last year that took two months to heal. Hmm. So I explored more.Even though I had been tested for Lyme twice by that point, I began to see/read the studies noting that Lyme Disease doesn’t have accurate testing or even appropriate treatment. I quickly found myself in the middle of a [very] heated decades-long debate between doctors, insurance companies, and lawmakers on Lyme Disease testing and treatment, or lack thereof.Want to learn more about Lyme Disease? Kayla breaks it down really well here. You can also read more about the controversies at Vanity Fair, the New York TimesABC News, and the Huffington Post. And if you really want to see what it’s like, check out a trailer of this documentary that was at Tribeca a couple years ago. That sums it up really well.

After mentioning my Lyme suspicion to a few friends, many responses were: “oh my gosh! I have a friend that had the same thing. I wonder if they’d have any advice for you!” Before I knew it, I soon was a part of a network of incredible people that are now recovering that wanted to help others get diagnosed & get effective treatment for Lyme Disease + its co-infections…and all the other junk that comes with it (Lyme Disease is similar to HIV in that is wreaks havoc on your whole immune system and triggers all sorts of other diseases).

Soon, my life became eerily similar to Dallas Buyer’s Club (https://www.youtube.com/watch?v=cC6mv0KhOBY): I had to see all of my doctors simply through referrals of well, basically, underground networks. It sounds crazy, I know. I was just as skeptical as you probably are. But, through a series of three specialists that actually knew what they were doing, I ended up at my doctor– who happens to be a worldwide expert in treating Lyme naturally with the most difficult cases. I was diagnosed with the main Lyme infection as well as the Babesia and Bartonella co-infections, and treatments very quickly followed. I tend to always come up with the rarest and most difficult forms of illnesses…I would almost say it’s a talent : )

Simply put, I had to fight to find/receive treatment, and it was often at the discouragement of my family, friends, and doctors. That can be a scary place to be, but I knew it had to be done. I am so thankful for the discernment to know it was Lyme, and I was coherent enough to be educated & advocate for myself.  My faith and those who have stayed with me and been my biggest cheerleaders are really what continue to carry me. (You know who you are, and to say I am thankful for you is an understatement. You are a gift.)

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source: joyrises.wordpress.com

the here and now

Fast forward to today. It’s May, and I’ve been going through the heavy-hitting part of treatment for a little over two months now. My health is so much better than it was in February. I’ve started eating again, I can fly again, and I can do more in a day than simply go to Whole Foods for 15 minutes. Even one week into treatment, I went to two days of SXSW and did okay! And, on really, really, good days, I might even be able to run just a couple minutes!

And, I must say, my medical team is boss. They are like family to me. My NP once told me with teary eyes that she planned on being at my wedding– and this was when I was at my very worst. Failure was not an option for her. If that day ever comes, you bet she will be there along with several other people who have been so instrumental in this process.

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As for now, I still have a long journey ahead. I still do have a lot of lingering symptoms (boo migraines and ME/CFS), and this healing process will still take several months and could take even a couple years as I hope to go into permanent remission. But, knowing I am already so far away from where I was even three months ago– there is hope. And a lot of it. So fellow Lyme patients (lovingly dubbed by the Lyme community as #lymies or #spoonies), know there is hope. There is a light at the end of the tunnel. Keep fighting and persevering, even though every fiber of your being may want to throw in the towel. There are others that have gone before you that are cheering for you- more than you’ll ever know.

Please know: I am not the hero of this story. My small story is a part of a much greater narrative, bigger than myself, or any of us. It’s a story about a Savior and a great God who doesn’t deny suffering- but enters in the very thick of it with us and promises us this world is temporary. In Him, we have a hope that is an anchor for the soul.

Anyways, that’s a small glimpse of my story. I see people that have been suffering for years that can’t get access to the medical care they desperately need, and it breaks my heart. So, if you know of someone that’s been struggling with some unknown health problems, please go to www.TBDAlliance.org and use their physician referral service. You will be well-connected to a knowledgeable doctor that will be able to help accurately diagnose whether it is Lyme or not!

I know that one day we’ll be able to look back and see advancements made in the medical community. But for now, I’m going to speak for those who can’t speak for themselves and defend the cause of the needy (proverbs 31:8).

My goodness…what an adventure this life is!

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